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

ABSTRACT

A highly significant element in politics and policies is the process of constructing, categorizing and imaging – such as categorizing citizens as target groups. In governing documents, distinctions are drawn to distinguish deserving and undeserving categories of citizens. This paper explores the construction of citizenship for people with dementia and the connection to underlying categories of rationales, by analyzing how this group has been categorized and imaged in policy documents. The study is based on a qualitative textual analysis of national policy documents in Sweden, covering nearly 40 years. It shows that the way people with dementia have been imaged has differed over time, where people living with dementia have been situated in various target groups and discourses. However, to a large extent, the underlying understanding has nevertheless remained persistent where the position of people with dementia has remained weak. It offers a taxonomy of categories of rationales and shows the interplay of rationales and target groups for certain social constructions. The study offers insights into the policy process related to policy change, and on citizenship as something transformative and interrelated that risks upholding democratic values that delimit disempowered groups, in this case people with dementia, to influence their citizenship.

KEYWORDS:

• Citizenship
• social policy
• social construction
• policy theory
• rationales
• dementia

Introduction

Citizenship encompasses the meaning and the practice of belonging to a society and its various policy areas. The process and relation between citizenship and policies are dynamic and intertwined; citizenship and the power of citizens have an impact on policies and the reverse; the policies have an impact on the meaning of citizenship, and further what in the end becomes the content of citizenship for the individual. This article addresses the question of how citizenship becomes constructed, by looking at how the social category of people living with dementia is constructed and employed in policies on a national level in Sweden.

The processes of constructing, categorizing and imaging – such as categorizing citizens as target groups – are highly significant elements in politics and the policy process. Politics and policies are based on categories and making distinctions; it is about ‘who gets what, when and how’ (authors’ italics), as superbly captured by Lasswell (1936), and not only covers how services are distributed and organized but also about distinguishing deserving and undeserving categories of citizens. Public policies are primarily means whereby government can influentially institutionalize, legitimize and change social constructions of citizens (Hajer 1993; Schneider and Ingram 1993, 1997, 2005) and further, on who belong, and who are or are not entitled (Yuval-Davies 2006). Policies send messages – and also images of social categories – are thus designed to have an impact on specific target groups. This impact is designed to be positive or negative (Schneider and Ingram 1993, 1997) and might also in practice, we argue, have unintended and unforeseen positive or negative consequences. In other words, the content of citizenship, that is, ‘what, when and how’ in Lasswell’s passage quoted above, is also dependent on the ‘who’, which is related to the categorization of citizens and further to the construction of the policy target group. In this paper, we will argue that these constructions and categorizations are important for how citizenship is interpreted and practiced by the actors working in welfare institutions and the space for each citizen to practice her citizenship. Also, as we will show, citizenship and target group images not only concern relations between the citizens and the state but also concern relations between citizens.

Citizenship is related to democracy and to the question of power; it conceives a relationship of equality between citizens. However, the labels and images that relate to the categorization of citizenship within public policies have implications that imply policy treatments that are not democratic nor equal (as argued by Ingram and Schneider; Stone 2012). The distinction between the social categories of a group of citizens and its image in public policies, both in documentation and policy practice, is influenced by underlying rationales (Schneider and Ingram 1997; Stone 2012; Colebatch 2009; Fischer 2009). These rationales and underlying assumptions justify and legitimize the distinctions and categorization of policy targets, and further, the course of action. Besides that, the rationales are also dependent on power, for example, following a justified rationale, some actors are declared to have knowledge and are regarded as appropriate participants in policy processes, and having power actors can also persuade a justified rationale (Schneider and Ingram 1993; Stone 2012; Colebatch 2009). In that sense, persistent images of social categories of citizens have influence on their possibility for participation, being included and having a voice – or in contrast and against democratic value: being excluded and not having a voice. In this paper, we are interested in exploring the position of people living with dementia in the Swedish welfare system and democracy by studying the construction of this category as policy targets over an extended period of time. The paper further endeavors to reflect on how these constructions, either persistent or shifting images, are related to different underlying categories of rationales. Hence, by studying the images of those who are subject to public policy, that is, policy targets, we can shed light on the power of the constructions and rationales behind endorsement and further how these have informed policies and the reverse. These labels and the attributes ascribed to them construct citizenship that also inform us on how various citizens are imaged in our society. It also tells us something about the temporal character of political problems as well as giving insights into the nature of policy change (or tardiness to change).

The aim of the paper is to explore the construction of citizenship for people with dementia by analyzing how this citizen group is categorized and imaged and to reveal the different categories of rationales behind these constructions. The specific citizen group in focus is that of people living with dementia. This is disentangled in terms of how they have been labeled and imaged, which attributes have been ascribed to them and how these have differed over time. The study is based on a textual analysis of policy documents, from the national level in Sweden, covering nearly 40 years. The paper offers insights into policy processes related to policy change, policy differences, the categorization and constructions of policy target groups and the different categories of rationales that lie behind them. By that, it contributes to the theoretical debate on citizenship as something transformative and interrelated, not only between the citizens and the state but also concerning the relation between the citizens, and further how these interrelations might uphold undemocratic values that delimit the possibility for some categories of citizens to influence policy areas as well as the content of their citizenship.

Understanding citizenship and imaging of policy targets

Citizenship is a complex and multi-facetted term. Simplified, citizenship always implies a relationship between rights and territory/entity, for example, an agreement between the citizens and the welfare authorities, which refers to a reciprocal relationship between rights and obligations.

As argued by several scholars, citizenship is a necessary democratic institution (c.f. Isin and Turner 2007; Schneider and Ingram 1997). It is not only related to entitlement to rights, such as civil, political and social rights (Marshall 1950) but also to having access, belonging and being included in participatory activities to affect the ways in which entitlements are formed and practiced, as well as engaging in civic activities (c.f. Lister 2003). Citizenship is also essential since citizens, due to their investments in political entity, assume that they have a legitimate claim when they fall ill or become too old to support themselves (Isin and Turner 2007).

Citizenship encompasses dimensions regarding how people experience themselves in collective terms and highlights dimensions such as identity, solidarity with others, social membership, belonging and the politics of recognition (Kymlicka 2001; Lister 2003; Bosniak 2006). By this, citizenship concerns not only the relationship between the state and the citizen but also the relationship between the citizens within the community. Citizenship is, according to our view, not fixed and not restricted only to formalities (such as nationality on passports), but constantly subject to negotiation, interpreted and therefore undergoing change. The changes in what citizenship actually is can not only be dependent on, for example, socioeconomic changes, norms, values and other occasions in our society (Turner 2001; Taylor-Gooby 2008), but also on how citizenship is practiced.

Citizenship is strongly connected to public policies. As such, when aiming to understand citizenship and the images of citizen groups, it is necessary to disentangle how we think of policy processes from an interpretive and critical perspective. Policies (such as documents, policy work and policy practice) are part of the construction of what ultimately will be the content and the space for exercising citizenship for and by the citizens. The process for the construction of policy problems and categorizing of groups of citizens is a highly significant element in the political and the policy process (Hajer 1993; Schneider and Ingram 2005). Public policies confer an identified ‘problem’, that is, not just ‘there’ but constructed in an ongoing process of collective definition including imminent appropriate solutions (Stone 2012), that can be understood as a questioning process (Turnbull 2013). On one occasion, a political phenomenon can appear as non-problematic, when the questioning is forgotten as a result of strong forms of answering and solutions. On another occasion, it may appear as problematic, when there are weak forms of answering, which reconfirm the questioning and maintain the phenomenon as problematic. A policy problem is complex, sometimes controversial – they are frequently described as ‘wicked problems’ (Schön and Rein. 1994) related to uncertainties and ambiguities with no simple solutions, even if they are often framed to follow pure rationality (Stone 2012).

An essential part in the governing and crafting and of citizenship is categorization, where the recognition of problems is related to the categorization, labeling and imaging of the specific group of citizens. As explained by Stone (1989): ‘Problem definition is a process of image making, where the images have to do fundamentally with attributing cause, blame, and responsibility. Conditions, difficulties, or issues thus do not have inherent properties that make them more or less likely to be seen as problems or to be expanded’. Categories give images of the person who is subject to public policies; these can be called policy targets. Categories of differences and distinctions position a person in a social location, these ‘are not just different categories of social location but categories that also have a certain positionality along an axis of power, higher or lower than other such categories’ (Yuval-Davis 2006, 199). Categories are ‘cultural recourses’ that invoke norms or justify particular arrangements (Holstein and Gubrium 2000). When categorizing citizens, certain attributes become ascribed in order to understand and navigate through our social and political world.

The construction of policy targets is a fundamental element in the allocation of resources, that is, when resources are translated into services. These are necessary for making policies politically and practically feasible. In order to receive services, citizens need to comply with the constructions of them, for example, display a certain need. This helps to reproduce the labels, images and ascribed attributes of groups of citizens (Jordan 2003). However, categories, labels and images crafted by actors working in public authorities are often seen as objective, efficient and necessary in order to meet specific problems and therefor carry on without reflection neither from the actors involved nor from the target group or the public. At the same time, as labels are used to maintain a certain order, they can be used as a tool for people, both for themselves or for others, to make claims and to expose political injustice, and by doing so gain access to the political space (Eyben and Moncrieffe 2007). What becomes dominating is dependent on which labels, whose labels and in what context they occur. Categorization and labeling are current in political process and are exercises of power. What becomes valued is in direct relation to the interests of those in power and the compromises they have to make in order to retain that power (Schneider and Ingram 1997; Eyben and Moncrieffe 2007).

Welfare organizations can not only either support or undermine established category images of various citizen groups but also call attention to former disfavored citizens and create new categories of citizen. The definition and construction of various categories of citizen are seldom explicit but often imbedded in policies. These send signals to the citizens not only about rights and obligations but also how various citizens are valued, what attitudes and what courses of action are regarded as appropriate and what services they can expect from welfare organizations (Schneider and Ingram 1993; Stone 2012). By that, these constructions might embed values that can be of an undemocratic character where some citizens are disfavored due to persistent negative images (Ingram and Schneider 2015).

However, in order for a category to become valid, it needs legitimization. To be able to receive certain rights, a person needs to belong to a culturally legitimate category such as children, elderly or ill. It is not only the individuals themselves who define the right to support but also the category to which they belong (Stone 1984). Though an individual does not only belong to one social category but also belong to different social categories (Jørgensen 2012), categories result both in inclusion and exclusion. Targeting certain categories for specific incentives will tend to make specific groups homogenous, overlooking differences within this group, for example, social representatives such as ethnicity, class, gender or religion, which will include people with differences (Yuval-Davis 2006). Vice versa, a narrow categorization of a group may exclude people on the argument of differences. This risks of course causing simplified and arbitrary categories in which incentives can be misguided in practice in terms of intended solutions.

In order to justify or legitimate target groups and certain courses of action, policies need to be based on plausible – at least within the construction of the specific reality – underlying rationales (Stone 2012). The rationales are the linkage between the policy design and the context. The rationale and knowledge which influence a policy area entail assumptions, norms and values that will explain and legitimate certain constructions of citizens, problems as well as solutions (Stone 1984; Schneider and Ingram 1997). Rationales thus do not have to conform to ‘reality’ but to our thought of ‘truth’. In policy, various types of rationales can be identified; scientific, which is dominated by positivist science; political, which relates to the distribution and management of power; and cultural, which refers to the norms and expectations in society (Lin 2003; Nedlund and Garpenby 2014). Clinical reasoning, in the form of medicalization and pathology, is a common rationale in policies (Isin and Wood 1999; Stone 1984). Clinical reasoning is used to evaluate and classify citizens, by examining the individual and comparing with established norms and with fixed characteristics. According to Stone (1984), clinical reason is used by governments in order to handle conflicts, legitimating social classification and functioning as a way of gatekeeping in a specific policy, that is, in the construction of citizenship. By that, this rationale may come not only with privileges but also cause stigma. The delineation often relies on some area of expertise, such as medicine (Stone 1984). In order to understand the policy process critically, we need to reveal the labels that are persistently ascribed to categories of citizens, which will also influence their political power or their political weakness, it is thus important to analyze on which rationales the construction of citizens is made.

Henceforth, policies position different groups in different ways, assigning them values by constructing certain groups and behaviors as problems. The belonging of a specific target group will not only affect the distribution of rights/entitlements and duties/obligations, that is, the citizenship content, but also the power to participate in the formation of policies and in the ‘humdrum politics of everyday life’, as explained by Isin and Turner (2007), in democratic societies. These processes are informed and shaped by interests, values and normative assumptions, both political and social, including rationales that legitimize the constructions (Durnova et al. 2015). This is a reason for deconstructing policies in order to accentuate the underlying rationales behind specific policies, and also which rationales are being used to justify a specific construction as well as a specific course of action. In this relation, policies construct citizens in terms of policy targets, which have implications for their citizenship and, in the long run, the democracy (Schneider and Ingram 2005; Yuval-Davis 2006; Fischer 2009). This is of democratic importance since the discerning of problems and of target groups as well as the formulation of policies is not only a governing activity but also a citizenship activity. It relates to the possibility of citizens not only being passive receivers but also having the opportunity to claim their right to participate, to influence and to form their citizenship.

Having given some theoretical insights into the processes behind construction of citizenship, policies and policy targets, we will examine the construction of citizenship for people with dementia by analyzing how a citizen group is categorized and imaged and reveal the different categories of rationales behind these constructions.

People with dementia as a policy issue

In recent years and in several countries, the political issue of people with dementia has gained more attention (c.f. G8 UK 2013). Due to demographical changes and rising longevity, where the number of almost 900 million people aged 60 years worldwide will increase rapidly, along with better and earlier diagnosis, the number of people with dementia will increase drastically in the coming decades. The number of people living with dementia is not negligible, it is estimated that 46.8 million people are living with dementia – a number that will almost double every 20 years (Alzheimer’s Disease International 2015). In Sweden, it is estimated that more than 160,000 people have dementia, and this is subject to increase (NBHW 2014). Among these, it is estimated that only 9% have been identified by clinical investigations. This increase in people with dementia will cause a strain on public resources, an argument, that is, accentuated in public debate. However, these numbers are only estimations. In Sweden, the formal information on the scope of the actual prevalence is lacking in contrast to other disease areas – a matter that arguably could indicate the arbitrariness and further the low status of dementia in medical, political and social context. Dementia comprises a group of diseases which share a number of symptoms: executive functions such as planning, changes in attention, memory and social cognition. Most of the affected functions are cognitive. Dementia has mostly been studied through a biomedical perspective focusing on the effects of the disease. However, the dementia discourse and the development of understanding dementia have moved from it 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, considering also the importance of how people’s experiences are shaped by sociocultural practices and assumptions (O’Connor and Nedlund 2016). 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.

Method

This study followed an interpretive research approach (Yanow 1995, 2000) based on a qualitative textual analysis of 165 national level policy documents in Sweden, such as those from the Government and Parliament Offices and the National Board of Health and Welfare (NBHW) over the period 1975–2013. The documents in this study not only mainly consist of reports and investigations but also legislation and directives as well as propositions to form new legislation or changes to existing legislation.

The search strategy and selection of policy documents were broad and covered differing policy areas since people with dementia as a policy target group, both explicitly but many times implicitly, are to be found in various policy areas. In our search strategy, we also contacted staff working in the archives at the NBHW and The National Archive in Sweden in order to see if they had additional documents to those that we had identified. However, their lists of material confirmed the documents that we had already identified. To clarify, when selecting documents, the criterion was not only that people with dementia had to be an explicit target group but also that the policies could cover people who had dementia, particularly in the early documents. This also marked the starting point for our search, 1975, since people with dementia started to become visible in the documents at the end of the 1970s. In total, over 165 documents were identified.

By taking a critical and interpretive approach, our focus, as guided by Yanow (1995, 111–112), was on ‘meaning created, conveyed and interpreted in specific situations as well as on the processes by which these meanings are made’. Since interpretations are not only the subject of study but also the method of investigation (Yanow 1995), the documents were carefully read in order to find views, framings and constructed problems related to people with dementia. The language, including texts, is a power tool in the discrimination of people or groups of people. The analysis was an iterative process exploring both horizontally across text and longitudinally through time. By doing this, we were making sense of the policies, whereby we then identified policy labels (Hajer 1993; Stone 2012; Wagenaar 2011). Rather than only asking what the problem is, we also asked ‘how’ and ‘why’ in order to understand their meaning and to reflect on ‘what is not’ (Yanow 2000; Fischer 2009). The analysis was conducted as a qualitative textual analysis and about analyzing, not a specific text, but aggregate unit of analysis which be referred to as a ‘constructed text’ as opposed to an ‘authored text’, which is about a constructed text that is, attributed to an actor in a policy issue (Yanow 1995). The analysis has been guided by the framework offered by Ritchie and Lewis (2003). The analysis aim to discern the labels, images and constructions that produce the formulation of a policy issue as a problem, that is, how political problems, in this case people with dementia, are presented in different ways in policy documents. 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. We have focused on each of the thematized categories and sought to seek out the attributes and the images that were used, but also not used, in order to constitute the group. Lastly, we have discerned explanatory accounts, which describe the grounds on which specific constructions of target groups are plausible, that are dependent on the underlying rationales. In this step, we identified four different categories of rationalities: technocratic/scientific, cultural, social and political (this taxonomy of rationales is described in the ‘differing imaging, same dominating rationales’ section). We kept in mind, when undertaking our study, an awareness that what dementia is regarded as today can have other connotations tomorrow since the meaning affiliated to the different labels, categories and constructions is changeable. Also, our intention is not to write differences into being, but to disentangle the various meanings that have been attached to dementia and to the various images and constructions of the policy target group.

The findings will be presented chronologically through identified periods and at the end, we summarize the various labels and constructions and their underlying rationales that have been identified in our study. The findings are kept brief; they do not claim to reflect reality or reconstruct periods and constructions fully. Also, expressions in the four periods represent the temporary construction that we found in the documents, that is, they are not our personal expressions. In order to make this clearer, we have marked them in citation marks. However, they shed light on the major labels, constructed images and their underlying rationalities related to people with dementia.

Findings

In this section, four periods are presented which cover 11 identified differing labels for people with dementia. The separation into the four time periods is not absolute.

<1979: from forgetful and deranged to deserving patients

During the 1960s and 1970s, there was an extensive expansion of nursing homes and long-term hospital care in Sweden, and a great part of the care of elderly and sick people was handled in the publicly funded health care. During the 1970s, the category of people with dementia was not explicit in policy documents. From the period, two labels of people living with dementia can be identified: Ordinary Forgetful Elderly and Mentally Deranged. The first one, ‘Ordinary forgetful elderly’, was incorporating ‘people with dementia’. However, what discerned the specific group of people with dementia from the group of ‘ordinary elderly’ was the image of being ‘forgetful’ and the attributes ascribed were that they had failing memories.

The other type of label was Mentally deranged where people with dementia were imaged by a negative behavior and where they imaged in terms of mental illness. Both of these images indicated a distinction of different stages of dementia where ‘forgetful elderly’ could be conceived as suffering mild dementia and ‘mentally deranged’ more severe cases of dementia, though these distinctions were not explicitly stated as related to stages of dementia at that time.

At the end of the 1970s and beginning of the 1980s, the situation of elderly became politically prioritized resulting in the enactment of a new legislation, the Social Services Act (SFS 2001:453, SSA), that embraces the individual’s rights to care and services and specifies that elderly care should be provided with regard to the individual’s dignity. This indicated that the target group of elderly, and thus implicitly people with dementia, had attention by being within the target group of elderly. However, having dementia was associated with having other attributes ascribed as compared to elderly in general. In the policy documents, we can see that a new target group started to emerge – Older demented patients. This category was either framed in terms of being Deserving or being Deserving but disturbing. People with dementia were considered ‘deserving’ and a subgroup to the target group of ‘elderly’, who were considered to have contributed to the state, for example, paid taxes, and accordingly were eligible for public services when needed. Though ‘older demented patients’ were depicted as having specific attributes that separated them from ordinary elderly – they were ‘disturbing’ and also described as ‘destroying the social environment’, by being annoying to staff, relatives, other patients and other citizens. As one director at the NBHW said, when looking back to this period, ‘we could really with reason ask the question’ ‘who loves a demented?’ and the answer was that ‘no one really does’ (NBHW 1985).

In other words, people with dementia deserved to be taken care of and the solution was to place them where they did not disturb their social environment. The solution was institutionalized care, in some cases referred to as asylums. A great number of ‘disturbing older demented patients’ resided in mental hospitals. In one regional authority, it became clear during the great deinstitutionalization of psychiatric care that as many as 74% of patients in the mental hospital had dementia (IPRHS 1978).

The imaging of people with dementia was to a large extent negative. They needed to be placed in specific institutions and hence were costly and too dependent on public services. The role of relatives in taking care of people with dementia was advocated; moreover, the target group’s disturbing behavior could be prevented and otherwise contained by being at home.

~1980–1989: severe and special needs

In the beginning of this period, a new framing emerged with the emphasis on differentiating between different types of elderly. At this time, people with dementia were included within the group of Elderly with severe needs and thus still differentiated from normal elderly. Under this label, the degree of need of the individual is emphasized, that is, in terms of severity. The need for prioritization and coordination within elderly care opened up to this new imaging. Several investigations  set up by the Government, Elderly Care Commission ([Äldreberedningen] enacted in 1980), Elderly delegation ([Äldredelegationen] enacted in 1980) and the ‘Ädelpropositionen’ (Government Bill 1990/91, 14), concluded that there was a need for ‘special-care facilities’ in order to handle elderly with various and often severe needs. These investigations resulted in one of the most extensive reforms in Sweden – the ‘Community Care Reform’ [Ädelreformen] enacted in 1992 – that concluded that elderly with severe needs should be prioritized over those with minor needs. Another imaging of people with dementia took the form of them being demented patients with special needs. This framing was driven by enthusiastic stakeholders, engaged in the care of people with dementia, who highlighted their special needs. In this image, people with dementia are depicted as a group that can be taken care of outside institutional hospital facilities, in contrast to the earlier categories, but still care demanding. The solutions were focused on social care and support of relatives. Housing projects became introduced that aimed to improve the situation for people with dementia. These had a more homelike design, decorated with traditional furniture in order to prevent their ‘unwanted behavior’ and where people with dementia could stay during daytime in order to ease the burden on relatives or other care personnel. These projects offered alternative solutions, which were later adopted by the state and became a standard for the care of people with dementia. These changes also influenced the way people with dementia were approached, even if they were still considered a burden to relatives and care personnel, the framing was more nuanced than before. People with dementia could have individual differences such as being in different stages of the disease or having different marital status. Aspects such as dignity started to be taken explicitly into account for people with dementia. However, people with dementia were still considered to have ‘other and special needs’ than the elderly in general.

1990–1999: overlooked

During the 1990s, there were extensive reforms targeting the health and social-care sector and also comprehensive reorganizations and economic downsizing in this sector. The target groups for these reorganizations were not directed explicitly at people with dementia and thus they were overlooked. However, there was extensive mapping out of different target groups such as people with disabilities and people with mental illnesses (The Disability Reform [Handikappreformen], enacted in 1994, see Government bill 1994/95:77; Committe Report 1994/95:SoU7, Mental Health Care Reform [Psykiatrireformen], enacted in 1995, see Government bill 1993/94:218; Committe Report 1993/94:SoU28). Even in these specifically targeted other groups, the imaging and definition of these groups indicated what people with dementia were not – the groups of people with disabilities and people with mental illness delineated themselves from people with dementia. People with dementia were not explicitly visible within the group of elderly either. This shows that the group of people with dementia were something outside those groups. During this period, people with dementia were mentioned in the final report (Elderly Commission – Final report 2000), aimed at monitoring the reorganization of elderly care. People with dementia were mentioned as a group that had been neglected during the reforms and thus needed to be highlighted.

~2000–2013: multi-diseased and as people with dementia

As a contrast to the former periods, people with dementia started to be clearly visible and acknowledged in several national policy documents. At the end of the 1990s and onwards, a new image, ‘Frailty elderly’, emerged in which people with dementia were included, and the focus within this framing was on the disease. This was also in line with the additional 1998 changes in SSA, which implied restrictions for elderly care, where the focus became on caring rather than on the social aspects of the elderly’s everyday life as it was previously. The cost of taking care of the elderly, as well as the number of elderly, increased causing economic austerity. Thus, within this label, the adhered view was that people with the ‘most severe’ health-care needs and ‘multi-morbidity’ should be prioritized. Along with the shifting labels of this target group – from frailty, ‘multi-failing elderly’, ‘multi-diseased elderly’ to most-diseased elderly – the number of diseases that qualified a person to be within this group changed. The underlying reasoning followed a medical model that focused on disease and illnesses. A governmental strategy was ‘good quality of care in dementia’ and the 2010 NBHW national guidelines focused particularly on health-care solutions. The government also offered incentives to the local authorities to register people with a dementia diagnosis improve on diagnosis and find solutions. During this time, a lot of work was done on how to define the target group of people with dementia, a group with attributes that were clearly, as described earlier, delineated from both mental illness and disabilities. People with dementia were still within the category of elderly but continued to be distinct from the group of elderly by having a disease.

Also, people with dementia started to become visible as an explicit group in their own right with, for example, special housing and day-care centers tailored to them. What was notable in this period was the shift in imaging of the group as people with dementia and not as demented. This followed the same development as it had for people with disabilities and people with mental illness. The imaging of ‘people with dementia’ indicated that there was a person and not only a disease, and thus attributes other than those connected to dementia were highlighted, such as ethnicity, age and severity of the disease. Attributes ascribed to people with dementia were lack of competence and lack of self-determination and decision-making capabilities. These attributes were discussed in terms of whether they should be forced into treatment or social care. Another framing that regained importance in this period was that of the relatives. In several reports, dementia is referred to as the Disease of the relatives. This framing also emphasized the home care for people with dementia, either by the relative or by the welfare state. During this period, yet another framing was beginning to take form. The person in the center of care was beginning to emerge and values such as self-determination, autonomy, dignity and right to individual choice became strong. Even though this implied a positive framing highlighting attributes of people with dementia as competent, the image was presented from the view of others – relatives – and not from the perspective of the person with dementia themselves.

Differing imaging, same dominating rationales

In this section, we will summarize the identified labels and constructed imaging related to people with dementia as well as the underlying rationales that are in play. The rationales entail assumptions, norms and values and justify and legitimate the course of action and the target groups that inform the images of people living with dementia and further their citizenship. The findings with regard to the different rationales are summarized in Table 1. The table shows that behind each of the labels and images, we can identify four categories of underlying rationales. We offer a taxonomy of categories of rationales that we have identified, these are a technocratic/scientific rationale, a cultural rationale, a social rationale and a political rationale.

Table 1. Labels and underlying rationales related to the construction of ‘people with dementia’.

Rationales Labels	Technocratic/Scientific	Cultural	Social	Political
PERIOD I <1979
‘Ordinary forgetful elderly’	Natural sign of ageing (senility)	Deserving Equality	Normal ageing Active	Positive Weak
‘Mentally deranged’	Medicine: failed mind, illness Institutional care	Deserving Solidarity	Deviant Disturbing	Negative Weak
‘Deserving older demented patients’	Medicine: illness	Dignity Equality Paid taxes Deserving Solidarity	Disturbing Burden to society	Negative toward positive Weak
‘Disturbing older demented patients’	Medicine: illness Institutional care Economy	Deserving From public to private solutions	Burden to society Cost-demanding	Negative Weak
PERIOD II ~1980–1989
‘Elderly with severe needs’	Medicine: illness Care: severe needs	Deserving Greater needs over lesser needs. Solidarity	Burden to society Sick	Negative Weak
‘Demented patients with special needs’	Medicine: illness Social care: not hospital care	‘Traditional furniture’	Disturbing Burden to society Unwanted behavior Homogeneity some individual differences	Negative toward positive Weak
PERIOD III ~1990–1999
People with dementia as overlooked	Medicine: illness	Deserving	Invisible Burden to society	Negative Weak
PERIOD IV ~2000–2013
‘Most-diseased elderly’	Medicine: disease focused Health care: frailty, failing Economy	Deserving Equality through greater needs Austerity Individualism	Burden to society The disease Cost-demanding	Negative Weak
‘People with dementia’ as a label	Medicine: disease focused Care: complex needs	Deserving Equality through greater needs Heterogeneity Individualism	Burden to society Incompetent Incapable But a person	Less negative Weak
‘Disease of the relatives’	Medicine: disease focused Care: complex needs	Normality Home-like Individualism Equality through greater needs	Burden to relatives, to personnel, to society	Negative Weak
‘The patient in center of care’	Medicine: illness Care	Deserving Individualism Equality, greater needs	Incapable Burden to society	Negative Weak

The technocratic/scientific rationale is based on scientific and technocratic reasoning, a so-called pure rationality (Stone 1984, 2012; Schneider and Ingram 1997; Lin 2003). This scientific model is dominated by positivistic science as if policies are value free, policy problems are indisputable and where continuous social and political problems can be solved by technical fixes and better/optimal scientific knowledge. The technocratic/scientific rationale is thus based on expert knowledge where experts from specific disciplines claim to have knowledge or are declared to have knowledge. These experts become the dominant actors in influencing specific policy areas. The underlying assumption is that the problem related to people living with dementia is part of a pre-given ‘neutral’ reality. This rationale has in the case of dementia been not only informed by medicine but also by caring sciences and has to a large extent influenced the imaging of people with dementia. In policy documents, people with dementia have often been described in relation to their disease. By being regarded as having, as described earlier, a ‘failed mind’ and being patients, they were instantly categorized as unhealthy, where the solution was institutionalized hospital care. In the second period, they were considered as having ‘severe needs’ and as ‘care-demanding’, which further emphasized the medical rationale where the technical solution was to find care facilities that could attend to their specific severe needs, though the focus was more on social-care facilities. During the third period, people living with dementia were not visible in the policy documents. Instead, the focus was on elderly in general, and by that on elderly care but not on deviant elderly care. This would explain why people with dementia were overlooked since their imaging was still informed by a medical rationale. In later documents, influences from the medical rationale are more visible and dementia as a disease has been given more focus. Labels such as ‘frailty’, ‘multi-diseased’ and more recently ‘most-diseased’, where dementia is one of several diseases in focus, have continued to follow a strong rationale based on technocratic expertise guided by a medical model, where better scientific knowledge and person-centered care is a quest for optimal solutions. As we have seen, the medical rationale has continuously been reproduced during all periods. People with dementia have been categorized as a group of unhealthy people, as a possible alternative option to the social model of disability. The target group has thus continuously been differentiated from healthy elderly and elderly who are not as deviant as elderly with dementia. The technical/scientific rationale is in this case also related to economic reasoning driven by ideas such as cost-effectiveness and optimization (as in the case of most-diseased elderly).

The cultural rationale concerns the norms, assumptions, values and expectations in society and confers messages of democracy, justice, citizenship and the capacity of society to solve collective problems (following Schneider and Ingram’s argument, 1997, though they do not make the distinction of categories of rationales that we do here). The cultural rationale thus displays an overarching message as to how we as a community should solve problems. In our study, we have identified that in earlier periods, there have been strong cultural rationales within the society that emphasized the idea of justice and equality amongst citizens. People living with dementia was deserving and entitled to service and support within the welfare institutions, not least since they were people who had contributed to society by being active and who had paid taxes, and resultantly deserved to be taken care of in the notion of solidarity. However, this type of reasoning was exclusively related to the category of being an older citizen, since having dementia was regarded as a failure and in the first period related to ‘madness’. In the second period and onwards, the cultural rationale shifted slightly more in line with the ideas of equality, solidarity and dignity and thus became more inclusive. During the course of time, a strong economical reasoning started to inform the cultural rationale, driven by ideas of distributive justice of scarce resources and liberal ideas such as individualism. Due to demographical changes, the number of people with dementia increased at the same time as the public health and social-care sector is challenged with increasing economical strains. The underlying reasoning is that citizens have to take greater responsible for health and social costs by out-of-pocket payments and moreover have the liberty to be independent individuals by making their own choices. By being labeled as cost demanding, see the social rationale, and with the shift to individualism, the solution to this constructed problem focused on caregiving relatives. Even though there had been a shift toward individualism, cultural values such as solidarity were still visible, since there was a strong notion that the responsibility of taking care of the citizens with the greatest needs still lay within the hands of public authorities.

The social rationale reflects the social constructions in terms of categorizing and making distinctions between the groups of citizens and also incorporates the attributes that are tied to categorizations and the making of stereotypes of specific target groups. The social rationale explains how the policy target groups have been imaged as a social and political problem and whether these groups, due to their construction, are deserving of beneficial incentives. Even if stereotypes and labels cannot explicitly be considered as justifying specific courses of action, they may govern policy and policy practitioners. The social rationale is informing the formulation of a problem and has, during the whole course of time, followed the premise that a person living with dementia exhibits ‘unwanted behavior’ that disturbs others in their social environment and thus needs to be removed from social activities. Also, people with dementia as a policy target group have been constructed as a burden on the whole society – in the beginning by being disturbing and later by being cost demanding. Moreover, the underlying assumption was that people living with dementia were a homogeneous group – there were no individual differences. People living with dementia were considered not to have control of their symptoms and therefore not to have the ability to affect their own situation. By being ‘sick’, they deserved to be taken care of by the welfare state. In the last period, the attributes of people with dementia have rather been described as the person being ‘incompetent’ and ‘incapable’ in e.g. not being able to make decision due to cognitive functions, also the heterogeneity of this social categorization is starting to emerge.

The political rationale is based on the distribution and management of power such as political resources and reveals how problems have emerged, been contested and transformed (Yuval-Davis 2006; Stone 2012; Schneider and Ingram 1997; Eyben and Moncrieffe 2007). The political rationale thus concerns the group’s ability to, either by themselves or by advocates, influence the policy, the construction of problems as well as the construction of the target group. In addition, it further affects the possibility of creating their own daily life. During the course of time, people with dementia as a political problem have been mostly negative. However, at the beginning of the first period, the underlying reasoning informing the political rationale was divided. On the one hand, people with dementia were regarded as ‘forgetful elderly’ and by that not divergent. On the other hand, people who had what we today would regard as moderate and/or severe dementia were regarded as ‘mentally deranged’, thus having a negative construction. However, in both of these cases, people with dementia had weak political power. Although with more and more emphasis on the disease and attributes linked to the disease, the negative connotation has got stronger during the course of time where their attributes have restricted them from being both socially and politically active.

Though, in the last period, being labeled as ‘People with dementia’ and thus highlighting the person instead of the disease, the target group has had a more positive connotation; but despite this shift, the political power of people with dementia can be, throughout all periods, considered as weak. The underlying assumptions informing the construction of the group have rarely been challenged and when they have been, it has seldom had any bearing. This is even more apparent since people with dementia themselves are rarely visible in policy documents, as in the case of the label ‘disease of the relatives’. Hence, during the course of time, the target group has been associated with limited political resources. This is also visible since people with dementia have been delineated from other policy target groups by these more powerful groups, such as ‘ordinary elderly’, people with disability and people with mental illness. Thus, the construction of people with dementia and their underlying rationales has remained uncontested both by the group themselves and by their advocates.

The construction of target groups and their underlying rationales, in the shape we have discussed above, reveals the justification and legitimation for certain courses of political action, and the underlying line of reasoning regarding how people become imaged as deserving or undeserving. As summarized in Table 1, there are multiple rationales in play related to different categories of rationale that occur simultaneously. It is hard to discern specific categories of rationales that govern policy concerning people with dementia, rather they all influence the policy issue of people with dementia as much as they influence each other. Also, our taxonomy of categories of rationales reflects one way of identifying policy differences. Knowledge, practice, norms and values cannot easily be separated in the policy process. They all run parallel to each other. However, not all rationales are important at the same time – the medical rationale has been more influential regarding the group of people with dementia. Even though people with dementia, through the technical/scientific (be it either medicine, care or economic science), social and political rationale, have been depicted as ‘sick’, a burden and politically weak, they have, through a cultural rationale, been taken care of by the state, or by relatives, by invoking normative values such as deservedness, solidarity and belonging (by being a member of society, community or family).

Conclusion

This paper has explored the construction of citizens, the categorization, images and underlying rationales, which are employed in policies related to people with dementia. In this section, we will return to the main theoretical issues of the paper.

In this paper, we offer a taxonomy of categories of rationales, these are a technocratic/scientific rationale, a cultural rationale, a social rationale and a political rationale, where we make a distinction between categories (in contrast to Schneider and Ingram 1997). Rationales explain and legitimize a particular course of action, they are related to the power to influence what is regarded as a problem and its inherent appropriate solution. Dementia has, over the years, been seen as a series of problems and the way in which people with dementia have been constructed has both shaped the understanding of what the problems are and inherently how the problems should be handled. Accordingly, as we can see, the questioning process (Turnbull 2013) of the collective definition of people living with dementia has been weak, since the answer has, to a large extent, been related to a medical rationale which is taken for granted. Though, as we have pointed out earlier, the definition of the problem and its imminent solution has shifted, also within the same category of rationale, our case shows that the medical rationale has dominated the policies covering people with dementia over the years. It has followed a pure rationality (Stone 2012) that has neglected to regard the policy problem as a ‘wicked problem’ (Schön and Rein 1994) and to regard ambiguities between and within all the categories of rationales in play. This pure rationality also cements persistent images and constructions where no alternatives have held sway. As pointed out by Stone (1984), clinical reasoning depoliticizes and disempowers some groups while empowering experts. It is used to handle conflicts, legitimating social classification where, in this case, the diagnosis is functioning as a form of gatekeeping in a specific policy area.

We also elaborate on the interplay of rationales, targeting groups for certain social construction. The domination of the medical rationale and the clinical reasoning also maintains a certain order and is a legitimate way of making claims – for the citizen in question or for advocacies – since the clinical reasoning displays a justified divergence from the ordinariness, that is, from what is regarded as healthy and therefore not entitled. However, even though the medical rationale has had importance in influencing the construction of the group, other rationales and reasoning such as equality and deservedness have made sure that people with dementia have been taken care of in one way or another. As our case shows, the interplay of rationales has implied that care has been provided to those in need, which also says something good about democracy and a well-functioning welfare system. Democracy is clearly implicated as criteria, and process for eligibility, for benefits involving the participation, or nonparticipation, of disprivileged citizens.

Our case offers insights into the literature of citizenship. Citizenship is interrelated, not only as relationships with government but also relationships between citizens within the society as a whole. A demarcation between different groups of citizens is constructed by the policy workers in order to allocate resources according to e.g. need and situation. Also, as we have seen, other policy target groups have actively demarcated themselves from people with dementia. The construction of different citizen groups follows an identity and belonging, either wanted or unwanted by the individual citizen, that by being defined as such relates to other categories of citizen. The construction of citizens as policy targets also send messages to other citizens regarding how they are valued, for example, whether they are diverging from what is ‘normal’ and whether they should be regarded as ‘good’ or ‘bad’ citizens. These interrelations may uphold undemocratic values that delimit the possibilities for people with dementia to influence policy areas, as well as their citizenship. Also, citizenship is something interrelated between citizens in terms of solidarity, where some citizens agree to step back to benefit others with greater needs.

Citizenship is transformative, as we can clearly see by exploring policy change over a long period. It is constantly subject to negotiation, interpretation and practices, and therefore undergoing change. The policy solutions have changed as well as the citizenship content for people with dementia. The categorization of the group has differed and shifted, but to a large extent the underlying understanding has nevertheless remained persistent, where the position of people with dementia in the Swedish welfare state is still relatively weak.

Our study shows us citizenship practice, citizenship in practice and as practiced, where constructions and categorizations are important for how citizenship is interpreted and practiced by the actors working in welfare institutions, and the space for each citizen to practice that citizenship. By establishing categories, we draw lines and make distinctions between people who are deserving and undeserving and allocate resources accordingly. However, these lines not only affect the allocation of resources but also the social status, identity and self-respect of citizens (Stone 2012). Categories not only inform the allocation of resources, as a way of using power to secure rights, but additionally have social consequences since they also inform and are related to practice. The construction of people with dementia seems to be a consequence of the lack of diversity in the actors involved, just as the knowledge that influences and shapes the rationale, and underlying reasoning will presumably have implications regarding the content of their citizenship.

Our case offers insight into our understanding of the practice of categorization, labels and images as a dynamic and iterative process, though also as something simplifying the phenomenon they are seeking to govern, where the labels and images are the means by which actors explain their view to, and of, others. Images crafted by actors working in public authorities are often seen as objective, efficient and necessary and therefore maintained without reflection. People with dementia have been regarded as a homogenous group which means that these processes tend to treat all who belong to said group as sharing equally its particular attributes (positive/negative) (Yuval-Davis 2006). To live with dementia is not something static and absolute, it varies from person to person and also from day to day. Our case shows that not all categories are important at the same time, people with dementia have been embedded in different categories and also overlooked when other categories, for example, the elderly, were stronger and dominated the policy field.

Keep in mind, since governance is conducted through rules, and rules are based on categories, the essence of governance is to construct categories of people. As we have seen in our study, the lines concerning the deserving/undeserving, and under what circumstances, are redrawn. Sometimes with the consequence of magnifying the stigma and social exclusion attached to the categories. In our view, citizenship practice is dependent on these types of categorizations, which can be interpreted and made sense of by e.g. actors working in welfare institutions encountering different social categories of citizens and also by the citizens themselves. The solution is not to eliminate the use of categories but to critically study them, reveal their underlying rationales and deliberatively discuss them. People with dementia have remained in a persistently weak position and are, to a large extent, absent from the process of policy formulation, which indicates that they do not have full citizenship. Thus, constructions have embedded undemocratic values by excluding some categories of citizens from the right to participate and air their views.

In order to challenge dominant perspectives and influence the categorizations and their underlying rationales, disprivileged and disempowered citizens need to have access to the policy processes, and thus to the process of categorizing policy targets in which their citizenship is partly crafted. There has to be a broader spectrum of knowledge on which these rationales are based that can challenge the persistent undemocratic message related to this categorization of citizens. In the case of people with dementia, knowledge from areas other than medicine needs more influence in the policy process in order to nuance the construction of this particular target group. An alternative view that seems to be starting to emerge in the dementia discourse is a social model of disability. Another view, such as a human-rights discourse, could also afford the possibility for people with dementia to actually make their own voices heard. What this case tells us is that we need to challenge underlying rationales that cement and become ‘naturalistic’, as facts taken for granted, in order to find solutions that enhance disempowered people to practice their citizenship and to be included in society.

Official texts

Approximately 165 policy documents.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the FORTE: Swedish Research Council for Health, Working Life and Welfare: [Grant Number 2014-0921 Democracy, Autonomy and Justice – Citizenship Practice for people with dementia.].

Notes on contributors

Ann-Charlotte Nedlund

Ann-Charlotte Nedlund is a senior lecturer in politics and policy analysis at the Centre for Dementia Research and the Division of Ageing and Social Change in the Department of Social and Welfare Studies at Linköping University, Sweden, from where she coordinates the International Research Network on Citizenship and Dementia. Her research centers on issues of health and social policy, governance, citizenship, legitimacy and democracy, with a special focus on interactions and meaning-making processes.

Jonas Nordh

Jonas Nordh received his PhD from the Center for Dementia Research at Linköping University, Sweden. His PhD project explored how social citizenship is influenced by policy processes concerning people with dementia.