Dementia Care Work Situated Between Professional and Regulatory Codes of Ethics

ABSTRACT

Safety, dignity and autonomy are keywords in care work for older people. Dementia, however, complicates the relationship between care workers and care receivers, in part because it affects memory, thought, perception, reasoning and speech. Thus it potentially influences the voice and consent competence of the individual. In such contexts, care work can become ethically challenging. This paper investigates how care workers in social care services ensure the safety and well-being of those receiving care and how these responsibilities must be weighed against the sometimes conflicting duty of upholding and respecting civil rights and individual choices when the older person has dementia. The empirical stage is home care and nursing home services in Norway. These settings provide a comparative foundation. Two different forms of ethical orientation are found to be active in the care workers’ accounts in this study: ethics situated in the care work profession, and ‘regulatory codes of ethics’ situated in organizational rules backed by legislation. Whether these forms create tension or strengthen each other in care work practices is an open question. The implications for care work services are discussed.

KEYWORDS:

• Autonomy
• care work
• dementia
• dignity
• ethics
• home care
• nursing homes
• restraints
• safety
• surveillance

Introduction

The responsibility for maintaining the safety of care receivers is at forefront of social care services for older people. Care workers are trained to identify risk factors, for example related to falling, nutrition and hygiene, and to help implement measures to reduce them. Such measures may, however, affect the autonomy of the care receiver if not performed with caution. When the individual has dementia, it adds further complexity to this issue (NCB 2009; WHO 2012). How are the balance between autonomy, safety and dignity and the resulting ethical implications handled in everyday care work situations and what are the resources guiding ethically sound practices?

The topic of ethics has been subject to something of a boom in the field of care work in recent years (Banks 2014), and research interest in the ethical aspects of dementia care is on the rise (see e.g. Qureshi 2009; Cott and Tierney 2013; Hofmann 2013; White and Montgomery 2014). Research on stakeholders in care work, such as care receivers and those family members and professionals providing care, documents the potential complexity of ethical practices. For instance, care workers may see a conflict between providing safety and ensuring a person’s autonomy (Alaszewski and Manthorpe 2000; Robinson et al. 2007). In a study of patients, relatives and care workers’ perceptions of risks and falling, the relatives and the care workers had a straightforward view aimed at eliminating risks to the best of their ability, while the older persons interviewed problematized the preventive measures as an attack on their identity (Ballinger and Payne 2002). Robinson et al. (2007) found that people with dementia found electronic tracking devices used in the care setting as having a ‘big brother’ image and constituting surveillance. These insights indicate the importance – yet complexity – of making ethical decisions in dementia care work. The welfare and surveillance technologies being developed in this sector to ensure safety for older people add to this complexity. Older people in general and those with dementia in particular have increasingly become targets of surveillance (Gubrium and Holstein 1999; Kenner 2008; Brittain et al. 2010; Joyce and Loe 2010a, 2010b). In the research literature, it is often claimed that surveillance must be weighed against other and perhaps more severe forms of control based on real and thorough judgements of the best interests of the individual (e.g. Wilber and MacHemer 1999; Welsh et al. 2003).¹

The morally difficult everyday assessments in care work are a part of the rationality or logic of care, linked to the specific nature of the care professions (Waerness 1984). The care research literature states that care work is a combination of intellectual, emotional and physical labour (e.g. Waerness 1984; James 1992; Tronto 1993; Sevenhuijsen 1998; Brannelly 2011; Barnes 2012). Mol (2008) argues that the logic of care is motivated by a combination of adaptability and perseverance. However, care work is being increasingly subjected to managerial ideas and practices (e.g. Mol 2008; Barnes 2012; Meagher and Szebehely 2013; Banks 2014), which could arguably also relate to ethics (Banks 2014). Accordingly, the understandings of ethics found in care work settings may be grounded in different types of ethics (e.g. Gremmen 1999; Barnes and Brannelly 2008; Weinberg 2010; Brannelly 2011; Banks 2014). Scholars have found differences in care work practices between the ‘ethics of care’ and the ‘ethics of justice’ (Gremmen 1999) or between ‘situated’ and ‘regulatory codes of ethics’ (Banks 2014). Regulatory codes of ethics are organizational rules that provide detailed guidance of what carers should do in particular situations. Gilligan (1982) makes a distinction between judgements based in legislation (justice ethics) and situated and contextualized judgements of what works in a particular situation (situated ethics). The latter is relationally based care conducted in a particular situation and anchored in the professional ethics of care. While these distinctions refer to a code of ethics situated in the profession, practice or context of care work at the one hand and regulations at the other, the distinction related to regulations vary between focus on legislation and focus on managerial regulations used to regulate the conduct of care workers’ practice. In the Norwegian context, managerial regulations are to be found at the local level of governance and are subjected to variation by municipalities, while legislation is national in scope. This article focuses on ethically challenging practices in formal care work related to the issue of securing the safety and well-being of older people with dementia without overriding their autonomy as adult citizens. How are situations relating to older persons’ autonomy and safety handled by care workers in the home care and the nursing home settings? What types of practices assist the care workers and what are the ethical sources that inform their work? This article investigates care workers’ perspectives on how they ensure their care receivers’ safety, autonomy and dignity in the setting of home care services and nursing homes, respectively. The research is formed by a study including qualitative interviews with 31 care workers working in Norwegian home care and nursing homes. Originally, the research project was particularly focused on the risks and consequences associated with caring for older people in the aftermath of hip fracture. However, during the empirical study, issues related to the practical, ethical and legal challenges of securing the safety of older people turned out to be strongly linked to dementia and led to a refocus of the research aims. Hence, the primary focus in this article is on care workers’ balancing between promotion of patient autonomy on the one hand and the protection against harm on the other.

The issues addressed have relevance beyond the Norwegian setting (see, e.g. NCB 2009; WHO 2012; Choe, Kim, and Lee 2015). In the following, the research questions are accompanied by a brief context section and a section on methods and data. Empirical illustrations of the handling of ethically challenging situations in dementia care work are presented from the home care and the nursing home context. When studying these practices and comparing them across these two different settings for formal care, the question arises as to whether the strict legal regulations in this field may actually reduce active consciousness of the ethics of everyday care work. This issue is addressed in the concluding discussion.

Context

Dementia affects many individuals as well as society as a whole and brings a range of challenges to care services in society. The World Health Organisation (WHO) notes that over 35 million people were living with dementia in 2010 – a number expected to double by 2030 and more than triple by 2050 (WHO 2012). In Norway, 70,000 persons suffer from dementia, a little more than 1 per cent of the total population.² A total of 80 per cent of those living in nursing homes in Norway have dementia, but at least half of the dementia population in Norway lives at home (NDH 2014).

Although some people with dementia in Norway are placed under guardianship, full guardianship is not commonly used and most people with dementia are formally autonomous subjects with citizenship rights. The UN’s human rights committee defines a person’s home as the place where the person ‘resides or carries out his usual occupation’ (NHRI 2014, 15). Following this definition, a nursing home should be seen as being the home of the residents. In 2009, the Nuffield Council on Bioethics in the UK, an authoritative institution on these subject matters, launched a report by an expert working team on ethical issues in dementia care with international relevance. The report states that society must do more to plan for how people with dementia can live well. Ethical difficulties identified in the report include balancing a person’s safety with their need for independence and freedom and deciding what is in the best interests of the person with dementia. The report problematizes narrow definitions of autonomy, and notes that autonomy understood simply as lack of interference may be dangerous in dementia care, as people may then just be left to themselves. The report also warns that the capability for autonomy should not be understood as being the same as the capability to make rational decisions. The current wishes and feelings of people with dementia should be seen as expressions of autonomy (NCB 2009, 25–27). This broad understanding links autonomy to well-being. Both past and present expressions of autonomy should be taken into consideration by carers.

Older people with dementia are a vulnerable group. Their consent competence may be limited, as they often face difficulties in accounting for their needs. WHO (2012) documents that the use of physical restraints is widespread in care institutions in a number of countries (WHO 2012). Research indicates that this is also the case in Norway, where restraints are often used without being anchored in formal decisions (Kirkevold, Laake, and Engedal 2003; Kirkevold and Engedal 2004; Malmedal 2013; Pedersen et al. 2013; NHRI 2014). The use of restraints in Norwegian health and social care services has been on the agenda in recent years, and in 2009, new legislation that specifies procedures for the use of restraints was implemented (Hem et al. 2010).

The responsibility for social care delivery (home care services, care homes and nursing homes) in Norway is delegated to the municipal authorities. Full time equivalents in the sector increased from 20.000 in 1971 to 130.000 in 2011 (Meld. St. No. 29 2012–2013). In that period, there was a downsizing of traditional institutions for older people, which were often associated with restraints and undignified conditions. The government’s aim has been to facilitate older people living at home as long as possible, and to accomplish that goal, homecare services are essential. The primary function of these services is to provide task-specific care, but they also function as a control mechanism by keeping an eye on people, by watching or watching over them. In the nursing home context, residents still have the same formal rights as if they lived at home, but they are regulated by organizational rules and surrounded by a wider net of technologies for social control (e.g. Malmedal 2013; NHRI 2014).

The research

This article reports from a research project on the management of patient rights for older vulnerable people in home care and nursing homes. There is a wide mix of arrangements and types of care facilities for older people in Norway, including facilities exclusively for people with dementia. In general, the nursing home population requires a more extensive level of care than those living in their own homes, but there is often a long wait to be admitted. The facilities included in this research project are not specialized with regard to diagnostic categories, but people with dementia represent a large group in both the home care and the nursing home context. There are many forms and stages of dementia. Generally speaking, the nursing home population tend to have more advanced dementia than those receiving home care. However, there are important overlaps in the two populations regarding different forms and stages of dementia, hence care workers in both settings are used to care for people with various and shifting symptoms of dementia.

The research included interviews with 31 care workers, all tape-recorded and transcribed. The interviews were conducted in late autumn 2013 and winter/spring 2014 in care settings, including home care and nursing homes, in two municipalities. The interviews were conducted during their working hours. The care workers were pressed for time but were allowed by their employer to be interviewed for up to one hour. The care workers interviewed were mostly registered nurses and licenced vocational nurses (LVN). The large majority of the interviewees were women, often in their forties and fifties and with many years’ experience in the sector.

Table

Home care:	Gndr/age/YoE	Nursing home:	Gndr/age/YoE
Lena	F, 40s, 10+	Anna	F, 50s, 20+
Birgit	F, 50s, 30+	Susann	F, 50s, 30+
Jenny	F, 50s, 20+	Ole	M, 50s, 10−
Siv	F, 40s, 10+	Sara	F, 20s, 5−
Anita	F, 40s, 20+	Synnøve	F, 30s, 10−
Gro	F, 40s, 20+	Filip	M, 30s, 10+
Heidi	F, 50s, 30+	Jennifer	F, 30s, 10−
Astrid	F, 30s, 5+	Monica	F, 40s, 10+
Vilde	F, 20s, 5−	Henriette	F, 50s, 20+
Petter	M, 30s, 5+	Venche	F, 50s, 30+
Johanne	F, 50s, 20+	Olav	M, 40s, 20−
Beate	F, 50s, 30+	Berit	F, 50s, 20+
Eva	F, 40s, 5+	Hanna	F, 50s, 30+
Sandra	F, 40s, 20+	Helene	F, 30s, 10−
Siri	F, 50s, 20+	Cecilie	F, 30s, 10+
		Marit	40s, 20−
			x

The aim of the care worker interviews was to gain first-hand knowledge of the everyday experiences related to cooperation and coordination between care workers, care recipients and those family members providing care. The interviews were purpose-oriented and structured by an interview guide. The questions were often broad and ‘ethnographic’ (see Spradley 1979), aimed at obtaining rich accounts of several aspects related to the nature of their work. Interview issues included everyday activities, the rhythm of a shift, handling of stress, management control, etc. I asked questions such as: What does a typical work shift look like? What are common challenges in your everyday work situation? What types of tensions or dilemmas may arise with patients and/or their next of kin? What do you do when patients refuse to adhere to your advice? Ethical aspects relating to the personal will of older people with dementia and issues related to restraints appeared as a central theme in these interviews and were found worthy of further analysis. The theme of physical restraints entered the interview conversations when care workers were asked to describe their work day and/or when exploring themes related to preventive measures against falling and other physical risks. For instance, they often talked about force and restraints as tools that they tried to avoid, and how this was done became a focus for analysis.

The analysis is thematically oriented and empirically driven, aiming for a realist tale (Bryman 2012). All interview transcripts were read individually, and the data material were discussed broadly within the research team. After an initial broad analysis of all the data, the challenges related to securing the safety and well-being of the older person were selected for closer examination. Through the analysis, I developed an understanding of the ethical awareness of the care workers as potentially situated in different sources ranging from the care work profession to new legislation, organizational rules and regulatory codes of ethics. Although themes and accounts were similar and overlapping between the cases of home care and the nursing home, there were also tendencies related to different forms of ethics in the two care settings that are found worthy of discussion. These were identified as regulatory codes of ethics and ethics situated in the care worker profession.

Care Work in Home Care – ‘ … I Motivate and Persuade; However, I Can’t Force Them … ’

The care workers described a busy workday in which specific tasks needed to be completed in a limited period of time, while they simultaneously maintained professional and compassionate service. The level and specifics of care provided in the home care setting selected in this study were managed through an individual care description anchored in a decision from municipal authorities. This care is provided within a tight time frame. Care tasks are operationalized with regards to the norms of appropriate use of time: for example, 20 minutes to help an individual shower, 15 minutes to give medicine, etc. These guidelines are illustrations of managerial regulations that regulate and influence care workers’ practice. However, these guidelines are not equipped with strategies for handling the complexities of care work and its ethics. As will be illustrated in the forthcoming paragraphs, sources for navigating ethically in challenging care situations is situated in practice-based knowledge.

A person’s home is an arena for marking one’s personal autonomy, and homes are filled with symbols of individuality and personal preferences. With that in mind, it is essential that the individual does not perceive their autonomy as being attacked or overruled by visiting care workers. The interviewed care workers stressed that they worked on the care receivers’ turf.

While providing specific care tasks in accordance to the individual care plan, the care workers also reported that they kept an eye on the general safety of the older person in the homes they work in. They look for symptoms related to the side effects of medicine, for instance dizziness (which may increase the risk of falls), and they have a keen eye for loose carpets and other objects that might make the older person stumble. The care workers may give advice on how to reduce risks, but the older person’s right to make decisions in his or her home is absolute, and the care workers are mostly aware of this right. However, the relationship between the autonomous older person and the professional mandate of the care worker becomes more complex when dementia enters the picture, requiring well-developed communication skills. As stated by one of the care workers,

We have to communicate carefully with some of them, perhaps especially those with dementia. We come into their homes, we have to meet them with respect and maybe we have to start with a little chat instead of … maybe the person obviously needs a shower, but we have to move forward carefully. And of course, we are not allowed to go against their wishes. If Miss Hansen does not want to shower this Wednesday, then she won’t. I can try to persuade her in a polite way, but if she does not want to, then we have to accept that.

The interviewees stated that they must accept the person’s decisions. They emphasized that they were not allowed to use restraints, and they referred generally to the legislation. However, digging deeper into the subject matter, there appeared to be at least two dimensions that nuance this view of acceptance as an absolute. The first view is related to where the line between voluntary and coerced actions is drawn, and the other is related to communication skills. Regarding the latter, the care workers told about various techniques they used to move the care receivers along, for instance by persuasion and flattery: ‘Oh, wouldn’t it be lovely to get your hair washed and curled – you will be so beautiful’. Many of the care workers expressed their understanding of people’s lack of desire to, for example, shower. One explanation for the resistance to showering was that the older generation did not have modern bathrooms when they grew up. If someone does not want to shower, then workers will try again later, and taking their time to get to know their clients often works. As the quote above indicates, it is often possible to win them over by arguments and persuasion. As another care worker elaborated,

Well, it’s about communication; you have to get to know the individual. But … often we manage to turn them around … It’s important to … not take away from them or take over … override them, right? It’s difficult to be specific because they are so different, right? With some it can be just to get them along to the bathroom, and then I know that they might get started. So then the task is to get them along (…) Often, if they say that they dońt want food, if you just discreetly place a piece of toast on the table, and dońt make a fuss about it, then they may start to eat, right? However, in the first place they didn’t want food.

The interviewees talked about their communication processes in such situations in a way that indicates more or less tacit knowledge. This practice could be seen as encouraging known or embodied action patterns. The skills talked about here included avoiding the need for oral consent: when the older person starts eating the sandwich or does not resist showering when they find themselves in the bathroom, it is seen as consent by practice. The workers have to get to know the person and find ways of communicating with him or her in order to help and enable the older person. It was often stated that what worked with one person would not necessarily work with another. Skills, experience and sufficient time is essential. Still, at times, these care workers face situations where the line between voluntary and coerced becomes crossed or blurry. When I asked a care worker what she usually does in such situations, she said

I try to motivate and persuade. However, I am not allowed to force them.

Interviewer: Is that an easy line to draw?

No, it is a very hard line to draw. Regarding hygiene for instance …  (…) when they start to smell and haven’t washed their hair … it can go several months. If it’s really bad, then it becomes hard, because you are moving towards the border line when you say: ‘You have to shower now! You are going to; you have to wash your hair.’ Then, I am moving towards the line where I almost force them. (…) And their relatives call us and say ‘You have to get it done, I refuse to visit my mother unless she washes herself’ and ‘my children won’t go here’ and ‘it smells like urine and you guys have to’. However, then we say ‘but we can’t’ and they say ‘You have to!’ So it’s very, very hard. (…) We spend much time with relatives on that, ‘My mother hasn’t showered’, ‘but I can’t force them’, ‘yeah but you can persuade’, but (…) we can’t just rip her clothes off, we aren’t allowed to.

These types of demands are challenging for care workers. The needs of the person with dementia may sometimes conflict with the needs of others. Both care workers and family members have a challenging job to balance needs and to address issues and understandings of informed consent and personal autonomy. Relatives often wish that the care workers would use more force than they are comfortable with. At times, the care workers watched when relatives stepped in. For instance, one of the interviewees told about a situation when the husband of a person with dementia undressed his wife with force in order to make the care workers able to wash her against her will. The care workers accepted the husband’s actions as within his broader mandate but nevertheless felt uneasy with the situation. At times, the interviewees felt that the line between consent and restraint in the care work situation was blurry and unclear.

When we enter and they are completely assertive that they do not want help, then we have been told that there is something called the paternal and the maternal tone. That we had to take the paternal tone. To be a little like this (hitting the table). That’s difficult I think, when I’m not able to win them over to do things, with good communication or a couple of tricks, setting the food on the table. When it goes beyond that, then we start feeling it.

For the care workers, it is obviously complex and at times challenging to balance the older person’s safety, autonomy and dignity while at the same time responding to the needs and wishes of relatives, all within the boundaries of their job mandate and the managerial regulations relating to, for example, time allowance. The care workers were well aware of – and sometimes referred to – the legislation that specifies limitations regarding the use of restraints, but the communication skills and ethical decision making introduced in these accounts are part of the care work profession and represent insights located in, and deeply linked to, the profession of care work, by demonstrating a capacity to read situations and act accordingly, and at times feeling uncomfortable with the situation. The carers illustrate that care work requires head as well as hand and heart.

Nursing Home Care Work – ‘Coercion at One Moment – The Next Moment, It’s Not’

Many of the ethical challenges described by the care workers in the two care settings studied here were quite similar, and addressing these challenges required skills found in the care profession. For instance, when people with dementia leave the premises, they are at risk and the nursing home has responsibility for them. The staff cannot, however, force them to stay. As a care worker explains,

We are not allowed to stop them, right? However, we can try to talk them out of it and trick them in a way. To go back inside … However, we have had people who do not want to come back inside, and then we discuss it in meetings with their relatives, what they wish us to do. And they often want us to use force to get them back in, but we are not allowed to do that.

The nursing home provides more or less total care and is responsible for the safety of the older people who live there. Wandering behaviour represent a practical challenge for the staff. The residents who wander must be assisted when they leave the premises, as legislation regulates that they cannot be restrained. However, resources for walking together with residents are limited. Several nursing home residents and relatives I interviewed complained about the lack of opportunities for care workers to accompany residents on walks outside of the nursing home. The care workers reported that they did not have the resources to provide such services on a regular basis.

Assistive technologies have a central place in the nursing home setting. Many of the residents are assisted by various forms of technical devices (walker, wheelchairs, etc.). The care workers mention a range of different assistive technologies that are used to prevent individuals from hurting themselves (for example, by falling) or to keep them from feeling lost or insecure. In contrast to the home care context, protective measures such as the use of bedrails, belts and locked doors, for instance, were a natural part of the repertoire mentioned by care workers in nursing homes. Such measures are regulated by legislation and must be backed by a formal decision in each individual case. Bedrails frequently came up as a theme in the interview conversations. Care workers are required to ask the individual every night whether they accept having the bedrail up. This is a complex area requiring ethical decisions based on discretion in the given situation. As a care worker commented, ‘At one point it can be perceived as coercion, in the next moment it's not’. This reflection indicates the crucial importance of using these devices with discretion. However, the interviewees referred often to the types of practices that required a formal decision of approval; these are required when the measure is defined as restraining, and these workers were occupied with judging the need for formal decisions regarding various types of care practices. They referred less to the types of discretionary practices that were frequent topics in the interviews with home care providers. In the nursing home setting, workers were primarily occupied with ensuring that they did not violate legislation.

In the next paragraph, I present empirical material covering a tool that is less intrusive than those mentioned above: sensormats used to monitor residents’ movement. Such tools were commonly reported as being in use, although in more primitive versions than the tools involved in Wigg’s (2010) study (see endnotes 1). Sensor mats give staff the opportunity to know when a person is getting up from their bed at night. For instance, if the night watch registers that the alarm has been activated from a mat in the room of a resident with osteoporosis or a history of falling, they can try to run and help them get up or at least can check on them so that they do not stay on the floor for long if they fall. These surveillance practices were not discussed in ethical terms, perhaps because they were formally approved and cleared by regulations. It is also relatively clear that the alternatives – such as tying individuals to the bed or risking having them lie helpless on the floor through the night, are worse. Still, there are ethical aspects related to surveillance practices that should not be neglected. In one nursing home, they did not have sensor mats, but for those with a history or perceived risk of falling, they made makeshift ‘alarms’ by sewing bells on their pyjamas or on their bed. The nurse and team leader commented that she thought that installing sensor mats would be more professional but explained that the use of sewed-in bells was a practical invention made at a particular time to secure the safety of an individual, and that it had been used several times since with others as well.³ She carefully explained that this measure did not require a formal decision to use. Hence, she saw this practice as being in accordance with ethical standards guided by regulatory codes of ethics. However, this practice still actualizes the question of the relationship between dignity, autonomy and safety, which will be addressed in the discussion.

Concluding discussion

In dementia care, making ethical assessments is an everyday practice (e.g. Hughes and Baldwin 2006; NCB 2009; Barnes 2012). For relatives as well as for care workers, upholding the autonomy of older people with dementia may at times conflict with other aims or values, such as that person’s safety or dignity. Care receivers, their relatives and the care workers may also judge situations differently. Care workers must weigh different considerations, and they may face sanctions if they violate formal legislation. The provided analysis has presented some ethically challenging care work situations, as well as practices for addressing them, in the context of professional care for people with dementia. Such situations are not unique to the cases studied here; rather they represent common challenges reported in care services across care settings and countries (see examples in Gremmen 1999; Oberle and Tenove 2000; Tønnessen, Nortvedt, and Førde 2011; Choe, Kim, and Lee 2015). Providing safety for people with dementia while maintaining their dignity and not overruling their autonomy is a demanding (and at times impossible) task. This task requires procedures, guidelines and skilled personnel.

The care workers interviewed in this study communicate with those receiving care in a number of ways, including by informing, motivating and persuading them. They must routinely make judgement calls as to which practices are ethically sound and which are not. They must evaluate particular individuals in particular situations in order to determine what works and what does not. Although such practices must be anchored through the legislation of ethical guidelines, they also require a good professional ‘eye’. The professional ‘eye’ of care workers is well described in the care research literature and in work on the ethics of care (Gilligan 1982; Waerness 1984; Tronto 1993; Sevenhuijsen 1998; Mol 2008; Barnes 2012).

For professionals caring for people with dementia, there are ethical dilemmas related to weighing different aspects, such as autonomy, safety and dignity, against each other. The autonomy of care receivers is a central framework for the care work in both cases studied here. However, a tendency was observed in that the interviewed care workers in the home care services more actively reflected the ethical aspects of practices affecting the older person’s autonomy than those working in nursing homes. Those providing home care appeared to have a more developed vocabulary related to describing these issues, in the sense that they more explicitly referred to these caring practices as ethically challenging practices and not as merely related to a question of legality and/or organizational rules. There may be several reasons for this variation. First, one should bear in mind that the qualitative material analysed here is limited in scope, and thus one should be careful with wide generalizations regarding the range or nature of this particular tendency. The two cases may be particular in ways that this study has not discovered, and the differences related to home care and nursing homes are not necessarily valid across time and space. Second, demographic variables in the two care settings differ; although there are overlaps between the populations in the two care settings, the demography of the nursing home population indicates that this population in general is more dependent than those receiving home care.

That said, the relatively more visible work evaluating such dilemmas in everyday practices in the accounts of care workers could be related to the fact that they work in the older persons’ home. People’s homes are rather autonomous social spaces, shaped through differentiated practices (e.g. Bourdieu 1977). Working in different social spaces may influence care workers’ awareness of people’s autonomy. The question of autonomy is likely to be higher on the agenda for care workers visiting those who live in their own homes, which may shift the ethical aspects of care and the associated dilemmas to the forefront of their awareness. Although the UN’s broad definition of a home includes nursing homes, the nursing home is a social system that differs substantially from people’s own homes, including differences in routines, regulations and the physical interior, among others, which may shape institutional processes that are significantly distinctive from those of the home care setting. The nursing home setting is characterized by a larger repertoire of means of social control than home care services. Some of these control devices, such as the use of bedrails and belts, are formally regulated and a decision is required to allow their use. In the nursing home setting, surveillance technologies of various types are distinct forms of power, as are potentially medication and the use of physical restraints. The means of social control and power resources found in these two settings of care actualizes awareness of power distinctions. In dementia care, forms of power include individual relations, laws, governmental technologies and programmes, surveillance and assistive technologies. In social theory, different scholars and theoretical traditions describe or grasp particular forms. The exercise of power might be both repressive and enabling towards people with dementia. The Foucauldian understanding of power may be of particular relevance on this point, as Foucault pinpoints the disciplining effects of repressive means of power in mental institutions and prisons, as well as productive means of power of governmentality and self-governance (Foucault 1977; Mik-Meyer and Villadsen 2012). What seems evident from the accounts of the care workers is that they try to make the patients do as they wish with the use of as soft means of power as possible, in order to maintain patients’ dignity and/or autonomy. In nursing homes, formal decisions that regulate the use of restraints are more commonly used than in the home care setting. Hence, nursing home staff is naturally more focused on these formalities and the regulatory codes of ethics that guide appropriate practice. There lies a danger, however, in that staff may become too focused on formal requirements to the detriment of considering everyday situations guided by their professional judgement.

In the abstract of this paper I raised the question of whether ethics situated in the care profession and ethics situated in organizational rules create tension or strengthen each other. Based on this study alone, the answer is not clear cut, and evidence may be found for both answers. However, the logic of the judgements that guide care practices must come from somewhere. It is not irrelevant whether this logic is based on skills developed in the care profession or in procedures and legislation. Ethical guidelines that indicate good practice may be useful for care professions, but ethically sound practices of caring for others require the use of human and professional discretion. Ethical issues require a relational response. In preparing for ethically sound care services for people with dementia, society needs to enable care workers to make good decisions. How to create a sound balance between these two different sources of ethics in the practice of dementia care should be placed at the forefront of policy development, research and education and in the management and practice of formal care.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

The study was funded by the Norwegian Research Council, project number 222141 and 229619.

Notes

1 A good example is a study that compares the consequences of different security arrangements to control and regulate wandering behaviour in dementia care (Wigg 2010). In the first setting, a public nursing home, wandering was controlled (and avoided) by locking the doors, which resulted in frightened residents. In the second setting, a private nursing home three times as costly, the doors were unlocked but a motion detector alarm went off when residents were walking and staff would then come and accompany them. According to Wigg, quality of life improves for those given the opportunity to ‘wander safely in the company of a care provider’ (Wigg 2010, 288).

2 A total of 13 per cent of people above 80 years old and 40 per cent of the population above 90 years old have dementia in Norway. The number is expected to double by 2040 (Norwegian Directorate of Health 2014).

3 This practice was also found in various nursing homes in the study of Kirkevold, Laake, and Engedal (2003, p. 494) more than a decade earlier: ‘Electronic surveillance was used infrequently, the most common type being an alarm which sounded when a patient left the bed. Remarks on some of the questionnaires indicated that this was often a bell-string fixed to the patient’s pyjamas.’