Care Ethics for Supported Decision-making. A Narrative Policy Analysis Regarding Social Work in Cases of Dementia and Self-neglect

ABSTRACT

Sweden has been held up as one of the most advanced states when it comes to legal realisation of human rights for older persons with dementia, and there are national policies that propose how welfare professionals are to fulfil these rights. However, previous research has repeatedly shown that care managers in Sweden make decisions that leave these persons and their families without suitable interventions, which is especially problematic in cases of self-neglect (an inability to care for oneself combined with resistance to receiving care from others) when basic living standards for health and well-being are jeopardised. This problem is increasing around the world as dementia becomes more common, but there has been little national or international research on policies affecting this matter. This article examines how national policies in Sweden guide care managers to work ethically in cases of self-neglect among older persons with dementia. Through a policy narrative approach, the findings specify care ethical standards that aim to support decision-making abilities in such cases. The discussion dwells on how weaknesses in the identified narrative, in the context of dementia-associated self-neglect, can explain why these standards seem to have little impact on practice.

KEYWORDS:

• Care
• social work
• dementia
• professional ethics
• care ethics
• self-neglect
• supported descision-making
• precarity

Introduction

The aim of this article is to analyse how national policies in Sweden guide care managers to work ethically in cases of self-neglect among older persons with dementia. Self-neglect is defined as an inability to care for oneself combined with resistance to receiving care from others (Doron, Band-Winterstein, and Naim 2013). This identified ethical problem for welfare professionals is common among older persons with dementia, a diagnosis that is increasingly common in countries with ageing populations (Doron 2014; Giertz, Melin Emilsson, and Vingare 2019), which has subsequently led to further study of the causes, experiences, and implications of self-neglect. However, how policies regarding self-neglect guide the professionals who are called upon to solve this problem has so far received little research attention (Doron, Band-Winterstein, and Naim 2013).

Sweden is recognised internationally as one of the most advanced states in the matter of legal realisation of human rights for older persons with dementia (Mattsson and Giertz 2020). In Sweden, social workers play an important role as welfare professionals in care management for what can be categorised as a generous, universal, service-led and decentralised elder care system (Olaison 2017; Dunér 2018; Szebehely and Meagher 2018). Care managers usually (but not necessarily) have a university degree in social work and care management is seen as one form of practical social work. The internationally recognised phenomena of soft law and soft governance are well developed (Fredriksson, Blomqvist, and Winblad 2012; Kalkan, Sandberg, and Garpenby 2015), and there are national public guidelines regarding how welfare professionals are to carry out their work.

At the same time, researchers in Sweden have for decades highlighted the challenges faced by social workers who must balance the sometimes-conflicting requirements of self-determination and protection in dementia care (Dunér and Nordström 2005). For instance, in a recent article, Mattsson and Giertz (2020) analyse current Swedish legislation in the context of qualitative interviews with older persons with dementia and their families about issues such as social needs, self-determination and consent. The result shows that care managers interpret Sweden’s current emphasis on self-determination strictly, which often leaves self-neglecting older people with dementia without appropriate interventions, even when the older person does not meet the basic standards for health and well-being. Clearly, Sweden’s guidelines have real implications for practice.

In this article, I show how national public policy has for some time encouraged care managers in dementia care to adopt a relational starting point to support their decision-making when working with self-neglect, and how these identified national public guidelines are in line with professional care ethical standards for social work. I then discuss why these professional care ethical standards for social work seems to have little impact on practice, and how the identified weaknesses in the policy narrative affect the current additional challenges of the Covid19 pandemic. Finally, I will discuss what these results imply about how the content and form of a policy narrative could be improved, if the goal is for policy to inform and enhance practice.

The international human rights of older people with dementia

The international rights of older persons with dementia are based on several international conventions. For example, Article Three in the Universal Declaration of Human Rights (UN 1948) specifies that everyone has the right to life, liberty, and security of person. Article Five states that no one shall be subjected to cruel, inhuman or degrading treatment or punishment. Articles Six and Seven give everyone the right to recognition as a person and to be treated equally before the law. Article Twenty-five states that everyone has the right to a standard of living adequate for the health and well-being of the person, for both their benefit and the benefit of relatives (or other interested parties). This right includes food, clothing, housing and medical care and necessary social services, and the right to security in the event of disability and old age.

Following the UN Declaration of Human Rights, the UN General Assembly has adopted several conventions for population groups viewed as especially vulnerable. However, to date, there are no conventions on the rights of older people. Instead, the Rights of Persons with Disabilities (CRPD) (UN 2006) strengthens the rights of persons with disabilities (regardless of age) and obliges states to pay extra attention to protecting the life and security, offering adequate living standard to, and socially including persons with disabilities. At the same time, guidelines from the UN’s Committee on Rights of Persons with Disabilities 2015 (Article 14 in the convention) emphasise that such support and protection should never be given through force or undue influence. Everyone – even persons with intellectual and psychosocial disabilities – should have the right to take risks and make mistakes on an equal basis with others. Such persons therefore have the right to refuse support and protection offered by the state. In addition, the guidelines specify that states should refrain from appointing substitute decision makers. A substitute decision maker is in theory supposed to operate based on the ‘best interests’ of the person concerned (Arias 2013; Harding and Taşcıoğlu 2018), but the effect is that the legal capacity of persons with disabilities is denied. Instead, welfare professionals are encouraged to work to support and enhance the decision-making capacity of the person with the disability.

Previous research on self-neglect

Even though most older adults worldwide are capable of living active lives without any more assistance than other adults, the ageing global population means that more and more older persons suffer from age-associated neurodegenerative diseases, including multiple classes of dementia (Arias 2013; Doron 2014). When a neurodegenerative disease becomes severe, a person’s capacity for self-care decreases due to difficulties with memory, processing information, and communication skills. The person’s ability to manage a home, food and personal hygiene decreases; at the same time, the person often becomes resistant to receiving care from others (Arias 2013; Doron 2014; Giertz, Melin Emilsson, and Vingare 2019).

Self-neglect is defined as the inability to care for oneself in combination with resisting receiving care from others, where resistance can be expressed verbally and non-verbally, physically and emotionally, actively and passively (Harding and Taşcıoğlu 2018; Ryrstedt 2014). This condition is common among older people with dementia, and it is associated with increased health risks (Doron, Band-Winterstein, and Naim 2013; Dong 2017), increased pressure on relatives or other caregivers (Bremer et al. 2015; Giertz, Melin Emilsson, and Vingare 2019; May-Chahal and Antrobus 2012), and increased challenges for professionals, including social workers (Doron, Band-Winterstein, and Naim 2013; Lundberg 2018; McDermott 2011).

In identified cases of self-neglect in older people with dementia, the person concerned can seem satisfied with his or her situation in general, and wish for his or her resistance to care to be respected (Band-Winterstein, Doron, and Naim 2012; Day, Leahy-Warren, and McCarthy 2013). Others who care about or for a person with dementia can perceive the quality of life as lower than the person in question (Gerritsen, Oyebode, and Gove 2018). Self-neglect then has to be explained by society’s values of a lifestyle considered ‘suitable’ for older people (Doron, Band-Winterstein, and Naim 2013). In addition, it is a challenge to assess and support the decision-making capability of an older person with dementia, since this capability can fluctuate over time as well as differ between domains of everyday life (Arias 2013). Involuntary treatments (such as physical restraints, psychotropic medication, nonconsensual care) are not evidence-based and have been found to come with serious health risks for the person concerned (Hamers et al. 2016; Heale 2019; Kong, Choi, and Evans 2017).

Striking a balance between self-determination and protection is thus a great ethical challenge for social workers in dementia care. It has been argued that, in order to handle this challenge, there is need for increased scientific knowledge, for more opportunities for reflection, and for the further development of a clear ethical ideology among social workers (Doron, Band-Winterstein, and Naim 2013).

Professional ethics for social workers

Professional ethics has been defined as being about applying theories of moral philosophy to real-life challenges faced by professionals (McDermott 2011). Professional ethics for social work by the International Federation of Social Work (IFSW 2018) state that social workers are to challenge institutional oppression and respect diversity, and to promote self-determination, confidentiality and privacy. These obligations are in line with the emphasis on self-determination in international human rights, and are related to the general ethical principle of autonomy (McDermott 2011). IFSW’s ethics also state that social workers are to advocate and work for peoples’ access to equitable resources. These obligations are in line with international human rights to a standard of living that is adequate for the health and well-being of the person and family. Previous research on care for self-neglecting older people with dementia relates such professional obligations to the general ethical principle of beneficence (McDermott 2011).

Clearly, in some cases, the principles of autonomy and beneficence can come into conflict with each other. Historically, social work has had two ethical rationales for scrutinising practice and resolving conflict: the right/duty approach and the consequentialist outcome-based approach (Evans and Hardy 2017; McDermott 2011). The right/duty approach requires social workers to follow preordained principles regardless of consequences. This approach could be interpreted as in line with the international human rights of people with disabilities, which holds a person’s right to autonomy as the most important human right, even if it means that a person lives in what is considered by others to be an inadequate standard of living (Doron, Band-Winterstein, and Naim 2013). According to the consequentialist ethical approach, in situations of ethical conflicts, the consequences for all involved parties should be considered, and the outcome that delivers the greatest total aggregate utility is identified as the best ethical option. This approach could be interpreted as in line with IFSW’s professional ethics (2018), which says that self-determination is to be promoted as long as it does not threaten the rights and legitimate interest of others. Going by this approach, it could be ethically correct to provide care to a person who says that he or she do not want it, if this action taken delivers the greatest total aggregate utility for all involved parties.

Both the principles of autonomy and beneficence in social work have been problematised because of the focus on solitary individuals only linked to others through social rights regulated by the state (Brannelly 2016). The right/duty and the consequentialists approaches to ethical conflicts in social work have been presented as part of a regulatory codes of ethics, focused on technical and rational reflections in formal decision-making (Evans and Hardy 2017; Lundberg 2018).

In contrast to the individualistic/bureaucratic approaches to professional ethics in social work, the statement of the International federation of social workers on the role of social work in social protection systems from 2016 emphasises that the underlying principle of social work is that individuals cannot live sustainable, fulfilled lives unless they are interdependently connected in informal social frameworks. Therefore, social workers should strengthen the resiliency of individuals, families, and communities. Such focus on social work as relational and community-building is in line with what has been called care ethics. Care ethics in social work focus on day-to-day intellectual, emotional and physical labour performed in order to care for the self, for others, and for the immediate surroundings (Banks 2016; Evans and Hardy 2017).

The care ethics paradigm includes examples of specified standards for how to scrutinise quality in social work. These specifics can include noticing needs of care, acting competently on these needs, evaluating the action through the care-users response, and evaluating the action in the context of human rights (Brannelly 2016). Care ethics has also been defined as focusing on building and maintaining relationships, moving slowly and engaging in hands-on work in the care-users everyday life, exploring why care-users are sometimes resistant to help, working to balance the right of self-determination of the care-user with the protection of the care-user and other concerned parties (McDermott 2011).

Method and the Swedish case

The aim of this article is to use a narrative policy analysis to investigate how national policies in Sweden guide care managers to work ethically with self-neglecting older people with dementia. In accordance with this methodological starting point, policy guidelines are understood as mediators of policy narratives that are constructed by national public policy actors in order to guide welfare professions. Policy narratives are seen as tools used to establish political coalitions and win battles about what constitutes the public good (Stone 2002). A policy narrative defines a policy problem, proposes solutions, contains characters (heroes, villains, and innocent victims), is simultaneously constrained by and played out in specific settings, and is permeated by belief systems (Jones and McBeth 2010).

In the study behind this article, international and national legal frames for elder care comprise the initial settings for the policy narrative examined. The belief system of the narrative is about professional ethics. Within this context, the plot (problem, solution, and belief system) of the policy narrative that is mediated through national policy guidelines are examined through a content analysis. The central research questions are: How do national policies in Sweden define and attend to self-neglect among older people with dementia? How do national policies in Sweden encourage care managers to deal with this defined problem? Which professional ethics underlie these policies?

The international human rights conventions and laws regarding elders in Sweden leave much room also for non-legislative modes of policy work – that is, for soft law and soft governance. This kind of governance provides tools for joint actions between autonomous actors (who may be either official or unofficial). In the Nordic countries, voluntary cooperation between actors within the political sphere is a key feature of what has been described as a consensual, negotiation-based political culture (Fredriksson, Blomqvist, and Winblad 2012). This kind of governance is evident in the Swedish elder care system, in which national guidelines for professionals are used so that local administrative autonomy is respected, while at the same time, national policy actors try to affect the local outcomes and results by suggesting how the work is to be done so that legal rights are fulfilled.

The Swedish elder care system

Even though the distinctive features of the Swedish elder care system have weakened in recent decades, it is still – by historical and international standards – a public, universal, generous, service-led and decentralised social service system (Olaison 2017; Dunér 2018; Szebehely and Meagher 2018). More specifically, there is no legal obligation for relatives to take care of an older family member (Bill 2008/09:82 p. 11). Swedish elder care is nationally regulated through a social framework law (the Social Services Act, SFS 2001:453), and is mainly paid for through and exclusively administered by social services at the municipal level, where political decision-making bodies are autonomous. Ageing in later life is primarily seen as something natural and not as something that in itself calls for health care.

The first paragraph and chapter in the Social Services Act states that public social services at the municipal level are to promote economic and social security, equality of living conditions, and active participation in social life for all citizens. These ambitions are to be carried out with respect for the self-determination and integrity of the citizenry, and so that individual independence is promoted. All citizens, regardless of age or disability, are expected to apply for, consent to, and (sometimes) choose between different providers of publicly granted care provisions (SFS 2008:962). Paragraph four to six in the fifth chapter in the Social Service Act specify the frames for how social services are to be used to ensure that specifically older people enjoy well-being and live dignified lives.

Based on this national legislation, social workers as care managers at the municipal level handle cases in which older people are granted practical provisions such as alarms, social activities and company, food shopping and distribution, and help with personal care and housework, in ordinary homes (ordinärt boende) or special housings (särskilt boende). The principle of ageing in place (that is, remaining in a community) is emphasised in national policies (Söderberg, Ståhl, and Melin Emilsson 2013). In 2012, the National Board of Health and Welfare estimated that 94,000 persons with dementia lived in their own apartment or house, alone or together with a partner, while around 66,000 persons with dementia lived in special accommodation (National Board of Health and Welfare 2012).

Persons with a reduced decision-making capacity can have different forms of guardians to help manage finances, through regular visits pay attention to their needs, and safeguard their interests in relation to the law. However, these interventions are in practice uncommon among older people with dementia (Giertz 2018; Mattsson and Giertz 2020). Substituted decision-making interventions are furthermore never to be applied in matters of care. Giving health treatment or social care to an adult person (including a person with dementia) against their will always requires support from other laws that are to be used sparingly. Social services are intended to prevent the need for compulsory measures, through providing appropriate health care, physical environment, activities, social inclusion, and treatment from staff (National Board of Health and Welfare 2013; The Swedish Dementia Centre 2015).

Collection, selection, and analysis of material

Within the above described national welfare settings, the collection of relevant texts for the study behind this article started in the Swedish national strategy for caring for persons with dementia (Government 2018). This initial text referred back to a host of other texts from the government, from national authorities, and from various boards and knowledge centres financed entirely or partly by national public funds. All identified texts were collected, in addition to further texts discovered during this collection process, for a total of 59 texts. Nine of these texts were especially important for further analysis in relation to the subject of this article. These selected texts are presented more in detail in Table 1.

Table 1. Selected texts for further analysis.

Publisher	Year	Texts
Swedish National Council on Medical Ethics (Statens medicinsk-etiska råd)	2014	Robots and surveillance in the care of older persons – ethical aspects (Robotar och övervakning i vården av äldre – etiska reflektioner)
Government	2015	SOU 215:80 Supporting and assisting adults’ decision-making on health care, social care and research (Stöd och hjälp till vuxna vid ställningstaganden till vård, omsorg och forskning)
Swedish Dementia Centre (Svenskt demenscentrum)	2015	Handbook Vision Zero – for dementia care without involuntary treatment (Handbok Nollvision – en demensvård utan tvång och begräsningar)
National Board of Health and Welfare (Socialstyrelsen)	2016	With the needs of the individual at the centre. Need oriented and systematic methods through documentation of the individual's needs base on ICF (Individens behov i centrum. Behovsinriktat & systematiskt arbetssätt med dokumentation av individens behov utifrån ICF)
Government	2018	The Swedish national strategy on care for persons with dementia (Nationell strategi för omsorg om personer med demenssjukdom)
National Board of Health and Welfare	2018	National guidelines – Evaluation 2018; Health and social care in case of dementia 2018 (Nationella riktlinjer – Utvärdering 2018; Vård och omsorg vid demenssjukdom 2018)
Swedish Dementia Centre	2019	About dementia, for care managers (Om demensjukdom för biståndshandläggare)
National Board of Health and Welfare	2019	A standardised course of action in case of dementia – a model for multi-professional collaboration for person-centred dementia care (Ett standardiserat insatsförlopp vid demenssjukdom – en modell för mångprofessionell samverkan för personcentrerad vård och omsorg vid demenssjukdom)
National Board of Health and Welfare	2020	webpage ‘Support the will of older persons’ (Stödja äldre personers vilja)

Writings in these texts that were especially central to the aim and research questions of this article were imported into the computer-assisted qualitative data analysis software program NVivo. These empirics were coded in subthemes under the parent nodes ‘Problem’ and ‘Solutions’ until the coding was judged to be consistent and saturated. Finally, I considered the formulation of the problem in relation to previous research about self-neglect and how professional ethics permeated the proposed solutions. The findings of this analysis is presented below in a manner that blends empirical description and analysis, as is necessary with such qualitative analyses.

Findings

The Swedish national strategy for caring for persons with dementia (2018) concluded that there was no overview of whether (and if so, how) knowledge about dementia care is progressing and spreading through policy and practice (30). The empirical data behind this article show that several national public policy actors formulate problems and advise care managers on how to work with dementia care in Sweden. These policy actors provide different pieces of information that fit well together in one coherent public policy narrative. However, they refer to each other’s work only to a limited extent, and seldom in a regular and transparent way to research, to proven professional experience, or to professional ethics. National public policy actors in Sweden can thus be said to produce a fragmented public policy narrative with a rather unclear knowledge base. This is the case even though research (for example) has been held up as an important external resource that policy actors can use to create policy narratives and coalitions that support them and the ideas of soft governance (using guidelines in this way is sometimes referred to as knowledge management) (Kalkan, Sandberg, and Garpenby 2015; Shanahan, Jones, and McBeth 2011).

Self-neglect

The explicit phrase ‘self-neglect’ (självförsummelse) is never used in the texts analysed for the writing of this article. However, the phenomenon is written about in most of them. The texts are careful to point out that both the inability to care for oneself and resistance to care from others can be due to active or passive behaviour. It is for example stated that older people with dementia can actively expose themselves to risks by (for example) deciding to go out without having the ability to find the way home again (Swedish National Council on Medical Ethics 2014, 76–77). They may also actively refuse social provisions that they are offered (Swedish Dementia Centre 2019, 28–29). In other persons with dementia, an inability to care for oneself is instead related to passivity regarding both one’s own needs and the possible or actual actions of others (National Board of Health and Welfare 2019, 42).

Self-neglect has been explained at an individual level by brain damage, and at a cultural level by society’s values of what is considered a suitable lifestyle for older persons (Doron, Band-Winterstein, and Naim 2013; Doron 2014). The individual explanation for self-neglect, but not the cultural explanation, is found in the texts analysed. The policy narrative in Sweden adds a special focus on a relational explanation and communication aspects:

Previous research has shown that communication with persons with congenital brain injuries is affected more by the ability of others to communicate with them, than by the disabled person’s own ability to communicate with others. (National Board of Health and Welfare 2016, 34)

The phenomenon is primarily explained by the inability of others to meet and support the older person in the right way. However, this inability among others is not related to general values of what constitutes a suitable lifestyle (cultural explanation), but to lack in their relational work through communication.

It is not surprising that self-neglect has been associated with health risks for older persons with dementia (Doron, Band-Winterstein, and Naim 2013; Dong 2017), but a topic that has received less attention is that self-neglect can also be challenging for other concerned parties, like friends and relatives (Bremer et al. 2015; Giertz, Melin Emilsson, and Vingare 2019; May-Chahal and Antrobus 2012) and various professionals (Doron, Band-Winterstein, and Naim 2013; Lundberg 2018; McDermott 2011). In the Swedish policy narrative analysed here, the consequences of self-neglect are specified as being about lack of respect for self-determination just as much as being about the older person not getting the care that he or she needs (Swedish National Council on Medical Ethics 2014, 12). Both of these problems are associated with increased risks for violence between older persons and caregivers (Government 2018, 15). The analysed texts mainly focus on the health and social risks among persons with dementia, while the consequences for related parties and especially professionals are given much less attention.

Supported decision-making

The text ‘About dementia, for care managers’ (Swedish Dementia Centre 2019) specifically guides care managers and advises them on handling self-neglect among older persons with dementia. This specific issue is also dealt with in some parts at the webpage ‘Support the will of older persons’ (National Board of Health and Welfare 2020). In other texts analysed, several professionals, such as care managers, nurses, assistant nurses, and so forth, are guided simultaneously.

All employees in elder care are encouraged to have at least basic knowledge about dementia, which is mediated through the Swedish Dementia Centre and the web-based free education ‘Dementia ABC’. Care managers and other professionals are encouraged to work against self-neglect through supporting older persons’ decision-making according to nine themes that will be further described below. The initial six themes aim to prevent self-neglect. Theme seven and eight are what to do in case of actual self-neglect. The final theme is applicable regardless of whether the care manager is working to prevent self-neglect, or working with actual self-neglect. The goal is consistently to make older persons and their related parties feel as secure as possible, both in life generally and specifically in contacts with authorities.

Early in the process

Under the first identified theme, it is highlighted that it is important to diagnose dementia as early as possible (Swedish Dementia Centre 2019, 18). In addition, it is considered important to establish early contact between a care manager and the older person in order to:

• collect the older person’s life story (Swedish Dementia Centre 2015, 19; National Board of Health and Welfare 2018, 87);

• talk about how he or she wants his or her care over time (Government 2015, 391), which requires that care managers first inform and then support the person’s understanding of the care system;

• get consent to collect information from others (National Board of Health and Welfare 2016, 60);

• specify who is to represent the person in case of reduced or fluctuating decision-making capacity in the future (National Board of Health and Welfare 2019, 18; Government 2015, 41);

• introduce some non-intrusive care and technological interventions early in disease process (Swedish Dementia Centre 2019, 28).

Multi-professional team

The second theme highlights the need for a multi-professional team. Professionals in social services and health care are encouraged to work in cooperation with each other, so that they form one multidisciplinary professional network around the older person and her or his social network:

… a basic team could include a specialist dementia nurse from primary care, a specialist nurse from the municipality, an occupational therapist from primary care or the municipality as well as an assessor for assistance. In addition to this basic team, it should be possible to add further competences with need, such as a doctor, a physiotherapist, a speech therapist, or dietitian (National Board of Health and Welfare 2018, 82)

It is pointed out that cooperation between professionals requires consent from the person at the centre of the process (Swedish Dementia Centre 2019, 78). It is also seen as important to continuously review the division of labour between different occupational groups within the teams, so that it is clear who does what and when, so that no duty is forgotten or duplicated. The skills of the different professions are to be clearly valued (Government 2018, 11).

Adjusted communication

The third theme is concerned with adjusting the communication, which is considered necessary for maintaining the relationship between the care manager and the older person. Such adjustments can be about:

• adapt the design of the relevant information to the individual’s capacity to comprehend the information;

• use alternative means of communication, like for example pictures;

• be a discussion partner for the individual, after they have reflected about their standpoint (Government 2015, 352–353).

It is emphasised that care managers are never to show stress during contact with older persons with dementia. The care manager is also to consider how the immediate environs, the timing of the meeting and company of a third party can support an older person’s communication skills (National Board of Health and Welfare 2020).

Varied and flexible support

The fourth theme is about the importance of offering varied and flexible support rather than starting from organisational preconditions and existing interventions:

It is about mapping and adapting care and taking preventative measures based on each person’s situation. (Swedish Dementia Centre 2015, 67)

To collect life stories early in a person’s process is thought to help a caregiver understand the person’s reactions and behaviours later, when there may be more advanced dementia. This background is seen as necessary for adjusting care individually, which can counteract involuntary treatment (Swedish Dementia Centre 2019, 23). It is not seen as possible to deliver whatever interventions the older person wishes for; instead, the final proposal of interventions is to be based on what the care manager considers reasonable, based on their overall professional judgment (National Board of Health and Welfare 2016, 47, 66).

Work with and support the social network

According to the fifth theme, the care manager is encouraged to work for the best quality of life possible for everyone in the older person’s social network, not only because of everyone’s right to health and well-being, but also for making the most of possible informal care (National Board of Health and Welfare 2016, 44). If an older person with dementia does not consent to working with her or his social network, the care manager is encouraged to contact members of the social network and to consider them as potential care receivers in their own right:

The needs assessor must also inform relatives that they have the opportunity to apply for support for themselves, adapted to their own needs. (Swedish Dementia Centre 2019, 34)

For some this means getting help with support that the person with dementia needs. For others it means that they themselves need support, information, or education from the municipality. (National Board of Health and Welfare 2019, 40)

According to the National Board of Health and Welfare (2016, 90, with reference to Bill 2008/09:82), family (anhörig) can includes all private persons who care for the older person, which, in addition to relatives, can also include for example neighbours or friends.

Following developments

After the care manager has established a positive relationship with the older person with dementia and her or his social network, and offered varied and flexible support, the next step is to follow the person as the disease develops:

The follow-up should happen at least once per year, but depending on the individual’s needs, it can also happen more frequently. (National Board of Health and Welfare 2018, 70)

The will and needs of the person is likely to change over time, and thus also the results of and requirements for interventions. Additionally, contact over time between a care manager and the older person is thought to give the time and opportunity for gradually increasing care, and to accustom both the older person and her or his family to social and technological interventions.

An active outreach approach

If there is active resistance to contact and care, either early or late in the process, reaching out and taking an active approach is advocated (National Board of Health and Welfare 2019, 62). Such an approach is for example specified as:

If the answer is no, don’t argue, but return. If you have tried to ring the doorbell, try again at regular but not too frequent intervals (if the situation does not seem very urgent). Another possibility is to ask home assistance services to ring now and then, to try to establish contact. (Swedish Dementia Centre 2019, 16)

There is no discussion in the texts analysed about how this active approach relates to legal requirements about respecting the person’s self-determination.

Different forms of consent

The analysed texts specify that an older person can give his or her consent to contact and interventions in writing, orally or through non-verbal communication like e.g. a sobbing nod (expressed consent) as well as through action that shows that he or she agrees (concluded consent). It is also said to be possible to work with presumed consent. Presumed consent requires that the person has been informed of a planned action, has not expressed any reluctance to its implementation, and that the action(s) taken has been in accordance with the will of the individual (Swedish Dementia Centre 2015, 83).

This theme specifies that there is no clear legal standing when it comes to how to work with these different kinds of consent in dementia care. Practices vary in different municipalities and different lawyers interpret the law more strictly or less strictly (Swedish Dementia Centre 2019, 80). It is argued that it is reasonable for actions taken by care managers to require a high degree of consent, and that the more intrusive the intervention is, the higher the requirement for consent should be (Swedish Dementia Centre 2019, 83). However, the policy narrative also allows leeway for care managers to demonstrate creativity in order to acquire consent:

There are those with dementia who believe that they work at an activity centre and there are others who believe that their short-term accommodation is a hotel. The most important thing should be that the person is at ease and happy. (Swedish Dementia Centre 2019, 81)

A less strong consent is thus presented as acceptable as long as a follow-up with the person shows that health and well-being have not decreased, but are at least stable and preferable increased. This in turn emphasises the importance of the need for qualified follow-ups by the care manager. There is no discussion in the texts analysed about how the creative solutions described above relate to the legal notion of consent without undue influence.

To work systematically and reflect

In the ninth and final theme, it is pointed out that there is not now, and will never be, a clear prescription for solving the problem of self-neglect. Different values and perspectives will continuously clash with each other in such work. It is thus seen as important for quality in dementia care that care managers reflect together and with superiors over time on how they deal with this issue (Government 2018, 29). It is also seen as important that care managers work systematically towards:

• meeting the requirements of the legislation (Government 2015, 30);

• making sure that all themes presented above permeate their work (National Board of Health and Welfare 2019, 10);

• developing a common professional understanding and language that facilitates cooperation between professionals (National Board of Health and Welfare 2016, 10).

Many different national instruments for investigations, treatments, and registers for follow up are to be used in order to work systematically. Is it also pointed out that a sufficient and stable workforce, as well as appropriate management and leadership, are necessary preconditions for this kind of work (Swedish Dementia Centre 2015, 67–78; National Board of Health and Welfare 2018, 94).

Care ethics for supported decision-making

In texts analysed, many of the themes presented above are said to be part of person-centred care (Swedish Dementia Centre 2015, 14; Swedish Dementia Centre 2019, 13; National Board of Health and Welfare 2018, 87, 94; National Board of Health and Welfare 2019, 10, 19–20). However, no reference is given to a scientific definition of person-centred care, and different texts relate different sort of content to the concept of person-centred care.

The nine themes presented above are well in line with care ethics in social work – that is to say, the nine themes take relational, individually adjusted, community- and resilience building approaches. They are also in line with previous specified standards for how to scrutinise quality in social work through the lens of care ethics, such as for example noticing needs for care, building and maintaining relationships, and exploring why care-users are resistant to receiving help (Brannelly 2016; McDermott 2011). An additional theoretical anchoring could therefore be to see the nine themes as another example of specified standards for professional care ethics. Since the themes identified by the analysis are presented as a way forward in balancing between self-determination and protection in case of self-neglect, care ethics also appears as the ethical school advocated for handling conflicts between the principles of autonomy and beneficence in dementia care. Social workers are thus encouraged to reflect upon and evaluate their work in case of self-neglect not only in relation how well they have respected an older person’s right to self-determination, but also in relation to how well they have lived up to the above specified care ethics standards.

Discussion

The findings in this article show that the concept ‘self-neglect’ is never used explicitly in the public policy narrative examined in Sweden. However, the policy problem that previous research has identified (by using the concept) is written about in most of the analysed texts. These writings add to previous definitions of self-neglect by specifying that both the inability to care for oneself and the resistance to receiving care from others can be due to active or passive behaviour. These writings also stress a relational, instead of an individual, explanation of the phenomenon. The self-neglecting older persons with dementia, and to some extent that person’s family, are characterised as victims in the policy narrative examined. Care managers are characterised as potential villains, who however can work in a certain way in order to become part of the solution and thus also the heroes in the story.

It is suggested that care managers solve the identified policy problem by supporting the decision making abilities of older persons in accordance with professional care ethics in social work and the following care standards: establish contact as early as possible; work in multi-professional teams; adjust communication; offer varied and flexible support; work with and support the social network; follow developments over time; adopt an active outreach approach; work with different forms of consent; work systematically and reflect together at the working place.

Previous research indicated that the above specified care-ethics standards had little impact on care managers’ practices in Swedish dementia care. The policy narrative examined in this article dwells to a small extent on this gap between vision and practice. However, considering the focus at the national policy level in Sweden is on guidelines that aim to spread knowledge to welfare professionals, the gap implicitly seems to be understood as primarily caused by incompetence among care managers, their managers and their leaders as well as local politicians and policy makers.

The policy narrative approach taken in the analysis adds that weaknesses in the narrative might explain the gap between vision and practice (Shanahan, Jones, and McBeth 2011). The examined policy narrative in this article lacks discussion about tensions between the legal emphasis on rights to self-determination without undue influence, and the way that care managers are advised work (by actively reaching out, by acquiring ‘weak’ forms of consent, etc.). The credibility of the identified narrative might also suffer because it lacks transparent reference to research, to proven professional experience or to professional ethics, despite evidence-based social work being seen as the goal to strive for.

A narrative’s limited effect on practice can also be explained by specific factors in its settings. The policy narrative examined in this article invokes an insufficient and unstable workforce as well as inappropriate management and leadership as possible explanations for lack of a care-ethics approach among care managers. This kind of explanation is supported by for example Vingare, Giertz, and Melin Emilsson (2020), which shows a weak connection between national guidelines and regulations and routines at the local policy level in Swedish elder care. In an elder care system that is less generous on an individual level (Szebehely and Meagher 2018) and that is staffed with an inadequate and unstable workforce, it is less likely that care managers (and their managers) will find time to search for and process a fragmented national policy narrative about how they are to work. Perhaps the narrative is not reaching its intended recipients. The situation could be especially acute when local policy makers do not examine the nationally proposed ethical care standards in order spread them locally and adjust them to local conditions.

Finally, the narrative identified in this article might have a limited impact on practice, because it clashes with other trending developments in elder care and professional identity. For example, since the end of the twentieth century, the development of New Public Management in elder care has increased bureaucratisation and time used for documentation, at a time when there is increased pressure for priorities between needs. Such developments have encouraged a professional identity among care managers that is more bureaucratic and is more about taking the role of gatekeeper rather than being based in care ethics (Dunér 2018; Olaison 2017). This raises the question whether there is something about the education and identity of social workers in Sweden that makes them more receptive to the role of bureaucrats and resistant to the identified narrative for supported decision-making in care management and cases of self-neglect. The current situation with the Covid-19 pandemic and its effect in terms of increased mortality among older persons in elder care in Sweden furthermore has directed current political interests towards issues other than care ethics per se (such as a potentially too-low level of medical knowledge among staff, or other problems with decentralised governance in times of crises). The question is also how care ethics can be put into practice in a context where physical contact between humans is seen as a serious risk for viral infections.

In conclusion, if a policy narrative is to encourage welfare professionals in dementia care to work according to care ethics, the findings reported in this article indicate that the narrative needs to present specified standards in a cohesive and accessible way. These specified standards need to have a strong knowledge base, be well matched with legislation and staff need working conditions appropriate for following the guidelines. These demanding aspects of the policy narrative need to be dealt with transparently, so that others can read about them in the policy narrative itself. Care management according to care ethics shall furthermore strive to realise the right of every human being to agency. In doing so, it needs to work against precarity and health problems that comes with lack of social safety nets around older persons with dementia and their related parties, as well as against that the eventuality people are de-humanised and badly treated within existing safety nets (Grenier, Lloyd, and Phillipson 2017).

Acknowledgements

I would like to thank Titti Mattsson and Lottie Giertz, for valuable comments on the manuscript. They both work in the Research Project: Whose voice? Law, care management and dementia, financed by The Kamprad Family Foundation for Entrepreneurship, Research & Charity.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author received funding for this work by the Faculty of Social Sciences, Linnaeus University.

Notes on contributors

Angelika Thelin

Angelika Thelin was educated to become a Social Worker at Lund University, Sweden and has a Master's degree in European Social Policy Analysis after studies at Roskilde University, Denmark and Bath University, England. She has a Ph D in Social Work and is currently working as a Senior Lecturer in Social Work at the Faculty of Social Sciences, at Linnaeus University. She has worked as the leader of the social work education at Linnaeus University, as a policy expert on social security in the Swedish parliament and as a social worker in child welfare.