Ethical issues in dementia guidelines for people with dementia and informal caregivers in Denmark: A qualitative thematic synthesis

Abstract

Numerous dementia-specific guidelines are offered to support people with dementia and their informal caregivers in dealing with dementia. However, the extent to which such guidelines address ethical issues and provide guidance for dealing with the issues has not yet been assessed. This study investigates the extent to which ethical issues are addressedin those guidelines, which ethical themes are considered and whatrecommendations are offered. We analysed Danish collected via onlinesearch engines and manual contact with relevant governmental, municipal and patient organisations from November 2020 to January 2021. To assess the scope of ethical issues in such guidelines, we devised an analytical framework using Beauchamp and Childress’s four principles of biomedical ethics and a data-processing method inspired by systematic reviews. We collected a total 653 dementia guidelines and screened them using formal inclusion criteria, such as publication year, target group and public availability. The guidelines that satisfied these criteria were screened for content related to ethical issues and recommendations. The guidelines that addressed ethical issues were then coded in NVivo 12 and analysed using thematic text analysis. In total, 59 guidelines satisfied the formal inclusion criteria. Among these guidelines, 15 addressed ethical issues, which fell into four transversal themes: (1) being open about the disease, (2) accepting help, (3) the line between dignified behaviour and overstepping boundaries and (4) decision-making and autonomy. The ethical issues addressed in Danish dementia-specific guidelines were diverse. However, the addressed issues did not represent a comprehensive spectrum of ethical issues as identified in relevant literature, and only a few guidelines contained substantial ethical content. In conclusion, this study indicates that the need for guidance on ethical issues is not being met by dementia-specific guidelines and that further research is required to provide additional ethical guidance that benefits people with dementia and their informal caregivers.

Keywords

qualitative thematic synthesis dementia guidelines ethical guidance ethical issues informal caregivers people with dementia

Background

Dementia has a fundamental impact on a person’s ability to lead an independent life. As cognitive abilities decline, decision-making becomes increasingly complicated, and, most often, informal caregivers, such as spouses or children, become progressively more involved in decision-making (Alzheimer Europe, 2014; Cresp et al., 2018; Livingston et al., 2010). Such increased dependence on others poses several ethical issues, as situations occur in which there are conflicting considerations at play, and one cannot make a decision without prioritising one consideration over another. These kinds of ethical issues range from simple dilemmas, in which only two considerations are at play, to more complex issues, whereby one has to choose from a variety of conflicting considerations. For instance, what should a wife do when her husband with dementia insists on driving, despite possible dangers to himself and others? How should she balance safety considerations with those regarding autonomy? Or, for instance, how should she act if her husband opposes being transferred to a day-care centre so that she could have some respite? How does one balance the wife’s needs with those of the husband?

Life with dementia involves many such issues, and caregivers often find themselves with insufficient knowledge and tools to confront them. Difficult ethical issues contribute to uncertainty and distress among caregivers or substitute decision makers (Cresp et al., 2018; Robinson et al., 2020). Moreover, caregivers often become concerned regarding the appropriateness and potential consequences of their decisions (Ehrenfeld et al., 1997; Moise & Um, 2004; Nolan et al., 2009; Teno et al., 1997; Tilden et al., 2001). Studies have shown that to foster more confident and informed decision-making in relation to life with dementia, caregivers need support in understanding and managing ethical issues (Hope, 2010; Low & Lam, 2017; Strech et al., 2013).

Consequently, dementia-specific guidelines can improve our understanding of and provide recommendations on how to manage ethical issues related to life with dementia. However, it is unclear to what extent such support is available in the existing guidelines for people with dementia and informal or family caregivers. Though ethical issues have been studied in relevant ethics research literature (Strech et al., 2013), the prevalence and characteristics of ethical issues in dementia guidelines for people with dementia and informal caregivers has, to the best of our knowledge, not been assessed yet. This knowledge gap makes it difficult to determine whether the need for guidance on ethical issues is being met. In this qualitative thematic synthesis of Danish dementia guidelines, we seek to close this knowledge gap.

Aim

The aim of this study was to determine the extent to which guidelines for people with dementia and their informal caregivers address ethical issues, which ethical issues they address and what recommendations they offer for resolving such issues.

Method

We have conducted a qualitative thematic synthesis of dementia guidelines for people with dementia and informal caregivers in Denmark. Our methodology was inspired by the qualitative thematic synthesis developed by Thomas and Harden (2008), which allows synthesising the findings of qualitative research. The method was developed due to the necessity to conduct reviews that would address specific questions that could not be assessed using a traditional systematic review – for example, whether an intervention meets the needs of a target population. Nonetheless, the qualitative thematic synthesis method is based on the methodology of systematic reviews and endeavours to uphold the key principles of systematic reviews. The method combines a rigorous search and sorting of literature using qualitative coding strategies, which are organised first into descriptive themes and then converted into overarching analytical themes (Barnett-Page & Thomas, 2009).

Search strategies

To collect the data, we conducted a comprehensive literature search by employing two complementary systematic data collection methods: (1) literature searches on publicly available online search engines and (2) data collection from select organisations that provide guidelines for our target groups.

Data collection took place from November 2020 to January 2021. The online literature search consisted of a combination of searches on Google and Bibliotek.dk (Danish libraries’ comprehensive database). To ensure the inclusion of all relevant guidelines, the Google search employed common synonyms for the word guideline (e.g. guide, manual and tool) in the following search string: “demen guide OR manual OR handb OR tool filetype:pdf.” The Bibliotek.dk search consisted of three searches (“dementia guide,” “dementia tool” and “dementia AND manual”) and a snowball search, which used the command [phrase.subject=“dementia”].

In addition, through purposeful sampling, we manually gathered a collection of guidelines provided by relevant public and non-governmental organisations. Purposeful sampling is a strategy that is often used in qualitative research for the identification and selection of information-rich cases for the most effective use of limited resources. Purposeful sampling involves identifying and selecting individuals or groups of individuals that are especially knowledgeable about a phenomenon of interest (Palinkas et al., 2015). We contacted the organisations that we knew to provide guidelines for people with dementia and informal caregivers and asked them to refer us to other potentially relevant organisations.

Table 1 shows the organisations from which we manually collected the data. All organisations were contacted by email (and over phone if necessary), and we also performed a search of each organisation’s website. For the organisations that did not reply (marked with * in Table 1) to emails or phone calls, we collected data through the website search only.

Table 1.

Manual data collection sources.

Public organisations

Dementia Coordinators in Denmark

KL – Local government Denmark

Danish health Authority*

Danish dementia research centre*

NGOs

Brain matter

DaneAge Association

The Danish Alzheimer Association

The dementia Alliance

The dementia Hotline

Demensven.dk

The People’s movement for a dementia-friendly Denmark

Living with dementia

Relatives in Denmark

Counselling and activity centres

Counselling and Activity centre Hvidovre*

Counselling and Activity centre: Dementia friendly North Zealand – Allerød, Helsingør and Hillerød municipalities*

Counselling and activities for people with dementia challenges – Næstved and Sorø municipalities

Dementia counselling and Activity centre East Zealand – Stevns, faxe and Køge municipalities

Activity and dementia counselling centre central jutland – Aarhus, favrskov, odder and Syddjurs municipalities and the local branch of the Alzheimer Association East jutland

Counselling and Activity centre West Himmerland – Frederikshavn, Hjørring and Læsø municipalities

Dementia community Lillebælt – Fredericia and Kolding municipalities

Counselling and Activity centre Lolland – Lolland municipality

Activity and counselling centre North jutland – Aalborg, Brønderslev, jammerbugt, mariagerfjord, morsø, Thisted and Western Himmerland municapalities

Counselling and Activity centre South West – Esbjerg, fanø and Varde municapalities

Counselling and Activity centre Viborg – Neurological department. (Central Region), DaneAge and Alzheimer Association*

The mobile counselling and Activity centre – Assens Langeland, Langeland, faaborg-midtfyn and North funen municipalities

Counselling and Activity centre South funen - Svendborg and Ærø municipalities

The dementia community fyn

Inclusion procedure

The guidelines obtained from the various searches were organised and assigned predefined values in Excel in accordance with the selection criteria (i.e., date, language, target group, publication source, availability, topic, and format) by screening the title and the introduction. Afterwards, the guidelines were sorted according to the established selection criteria (see Table 2) and by following the PRISMA diagram (see Figure 1).

Table 2.

Inclusion criteria and rationale.

Inclusion criteria		Rationale
Date	Published between 2013 and the date of data collection.	Pre-2013 guidelines are likely to be obsolete, as they are developed well prior to the Danish national dementia action plan.
Language	Danish	We did not have the resources to assess guidelines in other languages than Danish.
Target group	People with dementia and their relatives (informal caregivers)	People with dementia and their family caregivers receive little formal guidance, unlike formal caregivers. We therefore had special interest in assessing the guidance they receive. Much of the guidance provided to formal caregivers are provided as part of educational curricula and in executive programs, which is both outside the scope of, and unlikely ever to be presented to the target group, of this study.
Publication source	Public sources, such as national governments, local authorities or municipalities, and dementia organisations and NGOs.	The source of publication had to be a public organisation or dementia specific organisation, because those constituted a special interest group. Scientific and similar publications are unlikely ever to reach the target group and were not included.
Availability	Readily available to the public without fees	The target group should be able to easily obtain the guidelines.
Overall topic	General guidance on how to live with dementia	We would want ethical guidance to be a part of general guidance.
Format	Published in print or an online PDF document, of relatively short length	In print (either physical or online PDFs) material are one of the most readily accessible types of information about dementia.
Eligibility criteria for ethics-related content
Content	Significant ethical content (guidelines with noticeable ethical content) based on a broad interpretation of ethical issues.
	To identify ethical content in the guidelines, we used an analytical framework informed by Beauchamp and Childress’s (2001) four principles of biomedical ethics and the ethical issues described in Strech et al. (2013). All guidelines were analysed according to whether they addressed issues of autonomy, nonmaleficence, beneficence or justice (Beauchamp & Childress, 2001) and/or the dementia-specific ethical issues identified by Stretch et al. (2013) namely diagnosis and indication, patient decision-making competence, disclosure and patient information, decision-making and informed consent, social and context-related aspects, professional conduct and evaluation, and specific care situations.
	Sometimes, an issue was formulated in such a manner that it was unclear whether it constituted an ethical issue. In such cases, we applied a broad interpretation, taking into consideration the context and intention of the issue, and included the issue if we deemed it to conform to our analytical framework.

Figure 1.

PRISMA diagram.

The inclusion procedure consisted of two separate screening steps. First, we sorted them according to predefined selection criteria. Ineligible guidelines were removed systematically and according to the steps provided by the PRISMA diagram. Second, the guidelines that met the predefined criteria were divided between the first and second authors, who examined full-text guidelines according to the eligibility criteria for identifying ethical contents in the guidelines (see Table 2). To ensure assessment quality according to the eligibility criteria, the eligibility of specific guidelines was discussed at a team meeting, during which notes were compared and discrepancies were discussed until consensus was reached.

The guidelines that satisfied both the inclusion and the thematic eligibility criteria underwent thematic analysis.

Coding strategy and analysis

Out of the 59 guidelines that passed the formal eligibility criteria, 15 guidelines matched the eligibility criteria for ethics-related content. To determine which ethical issues were present and what recommendations were given, these 15 guidelines underwent meticulous coding followed by a thematic analysis based on, respectively, Maguire and Delahunt’s (2017) practical step-by-step coding guide and Braun and Clarke’s (2006) six-phase framework for thematic analysis.

The pre-set definition of what constitutes an ethical issue (i.e., the eligibility criteria) provided us with a well-defined baseline for coding. Two researchers, with backgrounds in philosophy and sociology (FSJ; SN), respectively, employed an inductive coding strategy and NVivo 12 software to identify specific ethical issues.

All coded data was reviewed and discussed by both the first and the second author. Once agreement regarding the coding structure was established, the guidelines were coded using NVivo 12 software, which ensured reliability and consistency in coding. All researchers discussed the identified issues to ensure that no important issues that were present in the guidelines were excluded from the initial inductive codes. Any issue that a researcher found in the guidelines but not in the codebook was added to the codebook, and the guidelines underwent secondary coding for the newly added ethical issues. The creation of initial codes was discontinued when no new ethical issues were found and when we were confident that our codebook was thematically saturated (Saunders et al., 2018; Urquhart, 2013).

We then searched for broader themes or patterns that could encapsulate comparable common features amongst our initial codes – in other words, we sorted and organised our codes into themes. This step was performed manually by working through hard copies of the codebook and arranging the initial codes into initial themes.

When generating themes using the inductively coded data, group meetings were held to discuss how the descriptive codes related to ethical themes in the ethics literature (Beauchamp & Childress, 2001). Two researchers (FSJ; SN) identified substantial portions of the data that represented significant ethical concepts or themes. The initial set of themes was refined and vetted in team meetings, which ensured that the data supported the final themes. At this stage, we made the final refinements of our themes by organising the initial themes into cross-cutting themes that shared the same meaning. The final themes were discussed in a workshop and given names. Then, we wrote a detailed thematic analysis for each theme and established the main narratives of the themes (Braun & Clarke, 2006).

Results

We found that only some guidelines had ethics-related content. A tenth (n = 59, 10.63%) of all the data satisfied the formal inclusion criteria. When probing for ethics-related content and recommendations, 15 of the 59 guidelines addressed ethics issues and provided recommendations. The thematic analysis of the 15 guidelines with ethics-related content resulted in the following four cross-cutting ethical themes:

• Being open about the disease

• Accepting help

• The line between dignified behaviour and overstepping boundaries

• Decision-making and autonomy

Below, we describe the issues related to each cross-cutting theme. Then, we discuss the recommendations (if any) that were given for solving ethical issues.

Being open about the disease

Several guidelines addressed the topic of whether one should tell one’s relatives and acquaintances about having dementia. This dilemma appeared, for example, in relation to the following situations: caregivers’ sense of obligation to maintain the confidentiality of people with dementia; the unwillingness of people with dementia to share information about the disease; or efforts to hide the disease. While such issues arise over the course of the disease, they seem particularly pressing in the early stages of dementia. One guideline underscored the tendency among people with dementia to attempt to hide early symptoms:

Most people with mild dementia often do everything they can to hide the disease […] and maintain dignity. […] [N]o one wants to show the outside world that you have lost your overview or self-control. (DaneAge, 2020)

Some caregivers may experience the tension between respecting requests for non-disclosure and the desire to let the outside world know, as illustrated below:

My wife did not want me to tell others that she was suffering from dementia. Both because she herself did not think it was true and because she was ashamed of it. (DaneAge, 2020)

Moreover, the appeal to keep the problems within the “four walls of the house” featured in many accounts, potentially originating from a fear of shame:

[…] They fear that other people […] will despise them. (Danish Dementia Research Centre, 2019)

A person with dementia elaborated metaphorically on the issue of letting other people in on such delicate matters:

You do not hang your dirty laundry out in public. (Danish Dementia Research Centre, 2019)

The worry of being “found out” or stigmatised seems to be a driving factor behind the reluctance or hesitancy to being open, receiving the diagnosis or knowledge of the disease. It is not uncommon for people with dementia to be in denial or lack insight into their own symptoms. The fact that they often do not recognise changes in their behaviour or personality, makes them reluctant to undergo diagnostic processes or accepting the disease. (Dementia Alliance, 2015).

Recommendations

Most guidelines stressed that disclosure of dementia was key to coping with the new, changing behaviour of the person with dementia:

What you achieve by hiding it is that friends […] do not understand what is happening […]. This means that they do not get the opportunity to help. (DaneAge, 2020)

Openness fosters understanding and provides access to the right support and […] help. (Danish Dementia Research Centre, 2019c).

Some guidelines suggested that in cases when people with dementia favour non-disclosure while relatives want the opposite, the relatives should act without the knowledge or against the will of the people with dementia:

[…] It is best if you agree with your loved one about openness. However, if this is not possible, it is recommended that you gradually become […] more open about how things are in a discreet way. (Dementia Alliance, 2015)

The guidelines agreed that receiving a diagnosis was preferable even when the diagnosis was met with reluctance by the person with dementia. One guideline recommended tricking the person with dementia into initiating the diagnosis process:

If you have a suspicion that a loved ones suffers from dementia and they do not want to go to the doctor, it may seem less frightening suggesting a visit to the doctor due to, e.g., metabolic problems. (Dementia Alliance, 2015)

Another guideline described how a son-in-law forced his mother-in-law to go to the doctor:

I made an appointment with the doctor […] my mother-in-law then became incredibly angry […]. But she went to the doctor and later became happy about it. (DaneAge, 2020)

Such recommendations emphasise the importance of seeking medical attention so that the correct diagnosis can be made and any treatment started as early as possible (Svendborg Municipality Social and Health Authority Department, 2016).

Accepting help

Another theme addressed difficulties with accepting help from others and the need for emotional or practical support. The central ethical issue is that for both the person with dementia and the relatives, the preference for independence may collide with the benefits of reaching out and receiving assistance. Several guidelines recounted that both parties may struggle with pride, fear of stigma or a preference for non-interference by others.

Regarding people with dementia, this theme was often expressed as reluctance towards receiving help, as people believed themselves to still be capable of performing certain actions that, in fact, they could no longer do (Danish Dementia Research Centre, 2019a). Accepting help presupposes the realisation that you can no longer behave as before, and it is difficult to accept that you are losing control of your life. The issue with accepting the disease was a common theme in several guidelines:

[…] This realization can lead to anger or sadness, which can cause your offer of help to be rejected. [Or] your loved one, due to the illness, has difficulty acknowledging the problems […]. (Danish Dementia Research Centre, 2019a)

Relatives also express fear of social isolation and stigmatisation as reasons for being reluctant to accept support:

Many relatives experience that their families and friends do not really understand their situation. Others experience being abandoned by their social circles when the illness becomes advanced. (Dementia Alliance, 2015).

The guidelines stated that informal caregivers often wish to remain responsible for caring for their loved one, despite there being professional care alternatives. Professional care is often viewed as an inadequate substitute for one’s own loving support:

Some relatives, especially spouses, prefer to do it themselves as they find this the most dignified solution for their relative. (Dementia Alliance, 2015)

My father… My responsibility. He did not like being in the nursing home. I picked him up every day so he could have dinner with us. I had a full-time job and kids, but I did it anyway. Every night when I dropped him off at the nursing home, he got furious. I was on the brink of the abyss […]. (DaneAge, 2020)

The idea of professional care as substandard may impede the acceptance of becoming dependent as well as the acceptance of support and often leads to informal caregivers taking on unmanageable amounts of practical and mental work because it can be difficult to set healthy boundaries. One caregiver stated the following, which seemed to be a sentiment shared by many:

[…] You forget yourself, and have a bad conscience when you spend time on yourself. (DaneAge, 2020)

Recommendations

In most guidelines, people with dementia and informal caregivers were advised to accept their disease, acknowledge their care needs and receive help from family and formal caregivers.

If you suffer from dementia, you have to accept that you may probably need help to cope with everyday life (…).

Practice saying yes to the support of others. (Alzheimer’s Association, 2015)

The guidelines stressed that it is also important for informal caregivers to recognise that the disease of their loved one will become too big a task for them to solve on their own. Not recognising this often leads to caregivers carrying a workload that could be shared with others. Early acceptance of dependence is important for setting healthy boundaries and for providing the best care for one’s relative with dementia. The guidelines argued that accepting outside help is crucial for informal caregivers’ wellbeing:

Because you – as a relative – have to take on more and more responsibility, stress and overload might creep in. Therefore, it is important to be aware of any signs of stress and congestion. (DaneAge, 2020)

Another guideline stated the following:

Your close relatives will often – with good reason – worry that the burden will become too heavy for you. So listen to them when they ask you to receive help. (Alzheimer’s Association, 2015)

Another perspective was that the relative’s wellbeing is not only important in and of itself but because it is a prerequisite for preserving the energy necessary to provide good-quality care. Being close to a person with dementia requires energy. To preserve energy, it is important to have space and time for yourself (Alzheimer’s Association, 2020). Another guideline emphasised the following:

The purpose of support and respite is that […] you still have the energy to take care of the dementia patient. (Alzheimer’s Association, 2015)

Another guideline used the following allegory to explain the importance of taking care of oneself:

Passenger aircraft safety instructions often state that you must make sure you put on your own oxygen mask before helping another. In short, one must take care of oneself in order to be able to help others. (Dementia Alliance, 2015)

The line between dignified behaviour and overstepping boundaries

The third theme dealt with dignity and interacting with one’s relative with dementia without overstepping personal boundaries. As the disease progresses, changes in what is perceived as dignified behaviour and communication with people with dementia often occur. Consequently, interactions with the person with dementia may change as well, which gives rise to several ethical issues.

The guidelines underlined that one cannot maintain the relationship as before the onset of the disease. The person with dementia gradually loses the ability to reason and make decisions, which means that the relatives have to assume more responsibility than they are used to.

However, the line between providing the necessary help and overstepping the personal boundaries of one’s loved one, which results in providing undignified care, is blurry. In a guideline, one person who’s loved one had dementia noted the following:

What is expected of me? How far do I have to go to help? What is the best help? Where is the line between reaching out and taking control? (Danish Dementia Research Centre, 2019)

While taking control may be uncontroversial and outright necessary in certain situations, it may be more intricate in others. In certain situations, the issue may be related to consent – for example, when it comes to intercourse. It might become difficult to determine where the boundaries lie and what counts as consent, since persons with dementia may become gradually more passive and unable to express explicit consent in an accustomed manner. Moreover, one may question the legitimacy of a given consent and whether such is convergent with the actual need of the person with dementia, as noted in one guideline:

[…] Sexual intercourse can be hampered by a bad conscience if the person with dementia is passive and unable to express their own needs. Thus, the healthy person may feel that he or she is exploiting his or her partner with dementia. (Alzheimer’s Association, 2015)

At the same time, as dementia often has a detrimental effect on the relationship, the informal caregiver may, begin to perceive the love of his partner as if they were in a parent-child relationship (DaneAge, 2020). This may pose further ethical problems, namely that the potential sense of obligation to engage in sexual intercourse may cause great strain to the relative. This may become particularly accentuated in cases when the person with dementia develops uncontrolled sexual behaviour (DaneAge, 2020). In both issues, there seem to be an outright tension between guarding the persons’ best interest, i.e., enhancing well-being and keeping them safe, and the person’s desire to remain autonomous.

Moreover, several issues may arise in relation to what constitutes ethical or dignified communication and behaviour, as people with dementia may confabulate or think they live in a different time. As one guideline explained, dementia can lead to changes in a person’s perception of the environment, and misinterpretations of sensory impressions can occur (Svendborg Municipality Social and Health Authority Department, 2016). Such situations may result in the person with dementia mistaking someone for another person, such as a deceased spouse, or not recalling that their spouse is, in fact, deceased.

Recommendations

Recommendations stated that the use of alternative realities in one’s interactions with the person with dementia was permissible:

Person-centered care implies that the starting point is the person with dementia’s own experience of reality. (DaneAge, 2020)

If she is back in the past, then stay there with her and have a talk about that time. (Alzheimer’s Association, 2015)

In some cases, the use of small lies, omission of information or alternative perspectives was regarded as being more beneficial than the truth. For instance, repeatedly informing a person with dementia that their spouse is dead might not be a preferable way of communicating. Here, it is argued that avoiding upsetting people might be a better way of communicating:

If you are talking about someone, whom the person with dementia cannot remember is dead, talk instead about how happy he or she was with that person and the experiences they had together. (Alzheimer’s Association, 2015)

What constitutes dignified behaviour changes, and the guidelines stressed that relatives should try to accept the changes associated with the disease, as acceptance may be the best way of optimising dignity and quality of life over time.

[…] You must embrace the fact that finding new ways to be together is vital – this regards how you communicate, how you act and also what activities you can do together. (Alzheimer’s Association, 2015)

If you try to follow and accept the changes, you will have the best time together. The worst thing relatives can do is trying to retain the person with dementia as how he or she was in the past. (Dementia Alliance, 2015)

The changes in what is perceived as dignified behaviour and communication places a great responsibility on the relatives in terms of adjusting appropriately to the new circumstances. One guideline pointed out the following:

It is the healthy person who has to adapt because the person with dementia cannot. (Alzheimer’s Association, 2020)

Decision-making and autonomy

As dementia fundamentally affects a person’s cognitive abilities, it has severe repercussions for decision-making and autonomy. In the guidelines, the most dominant ethical theme in terms of frequency was decision-making in general and particularly the promotion of autonomy of and consent from people with dementia. Two distinct aspects of decision-making and autonomy pose ethical problems: one concerns decisions made on a day-to-day basis with or on behalf of the person with dementia, while the other concerns decisions about the future that are made when the person with dementia is still capable of exercising autonomy and making decisions about their own life.

When decisions are made when living with dementia, issues may arise as to how the person with dementia should be involved in such decisions as dementia progresses. One guideline stated the following:

Deciding for oneself presupposes the ability to act. Ability to act means the ability to handle one’s own affairs in a sensible way and to have the necessary judgment in a given situation. This means that you can see the situation, assess any options and their consequences. A dementia disease can affect the ability to act, concentration, judgment, problem solving, etc. (Danish Dementia Research Centre, 2019b)

Many guidelines emphasised that informal caregivers should attempt to support the self-determination of persons with dementia, even when autonomy and capability to act have diminished significantly. One guideline noted the following:

Most people – including people with dementia – want to maintain their self-determination and independence for as long as possible. […] Try beforehand to clarify […] possible solutions together with the person with dementia, so that the person does not feel neglected or without influence. (Danish Dementia Research Centre, 2019a)

Regarding the capacity of people with dementia to exercise self-determination in the early stages of the disease, another guideline pointed out the following:

In the early stages of the disease, […] many things […] may still be upheld to some extent. […] It is important that you show respect for […] independence and for what he or she still can and is. (Alzheimer’s Association, 2015)

Several guidelines emphasised that the preferences and perspectives of the person with dementia must be included in as many decisions as possible because this might not only promote the self-determination of the person but also improve the quality of the decision:

Do not talk over the head of your loved one. It is important to involve the person. Recognition and respect for the person’s wishes and need for help should be respected. (Danish Dementia Research Centre, 2019a)

Moreover, the privileged knowledge that the informal caregiver possesses about the wishes and preferences of the person with dementia was, in several guidelines, described as something that may promote the involvement in decision-making of the wishes and preferences of the person with dementia. One guideline stressed the following:

With the knowledge of your loved one […] you can do a lot to ensure that he or she is involved as much as possible in decisions about treatment and care. (Danish Dementia Research Centre, 2020)

The guidelines unanimously stressed the importance of taking early measures in relation to, what might broadly be referred to as future decision-making, such as power of attorney, guardianships, advance directives, and advance care planning, while the person with dementia is still capable. For instance, they underscored that future decision-making is essential in preserving the interests and autonomy of people with dementia. One guideline described the benefits of future decision-making as follows:

[Future decision-making] strengthens self-determination and enables the person with dementia to influence his or her own life and future relationships despite illness or impairment of mental capacity […]. [It] not only makes it easier for you, it also gives your relative right to self-determination after he/she has lost the ability to act. (Danish Dementia Research Centre, 2019b)

Moreover, the guidelines argued that making decisions about care and treatment in advance, preferably early on, allows persons with dementia to express their values and preferences regarding their future situations, which ensures care that is consistent with their preferences and helps maintain a degree of decisional capacity and autonomy.

Discussion

This review has investigated the extent to which Danish guidelines for people with dementia and their informal caregivers clarify the ethical issues related to dementia and care and provide guidance in dealing with such issues. Our findings were three-fold. First, few guidelines (15/59) address ethical issues and provide recommendations on how to handle them. Second, the ethical issues addressed touch on the following four themes: being open about the disease, accepting help, the line between dignified behaviour and overstepping boundaries, and decision-making and autonomy. These cross-cutting themes all contain elements of the same bioethical principles, which was used as part of the analytical framework. However, it should be noted that the themes, in terms of content, might potentially be expressed in terms of various bioethical principles. For example, many themes, including that of being open about the disease and decision-making and autonomy, could readily draw on principles of autonomy, as well as that of justice. Likewise, the issues presented in the theme Accepting help or that presenting dignity and boundaries, might undoubtedly be seen as operationalizations of conflicts between various principles, e.g., how to balance autonomy and beneficence or autonomy and justice. The third finding was, when comparing the ethical issues in the guidelines to the ethical issues discussed in scholarship, it is clear that the guidelines do not address many of the ethical issues identified in the bioethics literature on dementia (Alzheimer Europe, 2014; Hope, 2010; Strech et al., 2013). While one might doubt that one can even exist, the guidelines do not present an exhaustive list of issues, and fail to address important issues, such as the use of GPS and other monitoring techniques, covert medication, or the mere notion of ethical issues as a central challenge in life with dementia. The lack of ethical guidance in relation to potentially relevant ethical issues identified and discussed in the literature, could indicate that dementia-specific guidelines might need to be adjusted to better support both people with dementia and their informal caregivers.

However, and in contrast, one might also argue that there might be more fundamental challenges of including ethical or normative guidance on ethical issues in guidelines at all. Providing too directive or definitive guidance on what to do and how to act when facing ethical dilemmas, might be problematic for especially one reason. An appropriate response to the given ethical issues highly depends on the context in which the response is provided, meaning that what is right, ethically speaking, depends on the circumstances in the situation. In this respect, one might argue that guidelines should be cautious when it comes to providing too directive information in ethical issues where there might be various legitimate, although non-converging normative account of what the right response is.

In this context is might also be noted that guideline writers should especially be cautious of presenting any kind of concrete guidance on ethical matters, when the ethical or philosophical debate on a given mater is controversial. Take for instance the most dominant theme in the guidelines, i.e., that of decision-making and the promotion or preservation of personal autonomy. Here, the benefits of advance decisions-making were championed and recommended across the guidelines. However, challenges associated with interpreting such advance decisions and whether or how to follow them were not explicitly discussed or mentioned. In the field of bioethics, however, advance decision-making is highly debated and often viewed as problematic if granted too much moral weight (Dresser, 1995, 2021; Walsh, 2020; Wolff & Law, 2012). Hence, the harmonious encouragement to engage in future decision making might too be problematic if unaccompanied by adequate counselling, be it legal and ethical, as to how such decisions might later be interpreted. But the question remains as to what such ethical counselling or guidance should look like. While it remains outside of the scope of this paper to discuss, there might be several interpretations of what such counselling or guidance could look like. One might for instance shift the focus from the provision of normative solutions to ethical issues to processes in ethical decision-making and how various values should be incorporated.

Strengths and limitations

Although the findings of this study might be used to improve guidance in Danish context, the methodological approach of and the issue raised in this article may inspire similar research in other national or international contexts. As dementia guidelines are not collected in a single database, we believe that our combination of two search strategies was an advantage, as such a strategy increases the probability of including guidelines that are likely to be found by people living with dementia as well as their informal caregivers. To the best of our knowledge, such a quasi-systematic search and analysis of ethical content of dementia-specific guidelines has not been conducted either in the Danish or an international context.

However, the fact that we only included written guidelines may be a weakness, as guidance on ethical issues may be received in a different manner. By including other material, such as web applications, interactive online services or in-person counselling of people with dementia and their relatives, the scope of the data could be expanded. However, a considerable share of people in our target groups may not be comfortable using online applications or services; therefore, the data we have examined is the most readily accessible. Moreover, even if guidance is being offered elsewhere, the deficiency of how ethical issues are presented in the guidelines is a problem because guidelines are an important source of information to people with dementia and informal caregivers.

Further studies should evaluate to what extent people with dementia and their informal caregivers receive ethical guidance elsewhere, using other resources than those included in this review, such as counselling or guidelines in other formats. This is crucial knowing the positive effects of adequate support on people with dementia and their caregivers regarding their management of distress associated with everyday decision-making when living life with dementia.

Conclusion

This article has shown that although some ethical issues are addressed in Danish dementia-specific guidelines, the majority of the guidelines do not address ethical issues, while those that do omit important ethical issues. Moreover, reflection on ethical principles and values is not encouraged or supported by the guidelines. This is important, as researchers have revealed a need for and the positive effects of support in ethical decision-making for people with dementia and their caregivers. Consequently, the need for guidance on ethical dilemmas appears to not be adequately met in Danish dementia guidelines.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was carried out as part of the project titled "DEMENTIA ID", at the National Institute of Public, University of Southern Denmark, and has received funding from the Velux Foundation, within the frame of the program, HUMPraxis. The research was carried out under the Grant agreement nr. 27773.

ORCID iD

Frederik Schou-Juul

Frederik Schou-Juul holds a Master of Philosophy from the University of Copenhagen and is currently employed as a research assistant at the National Institute of Public Health at the University of Southern Denmark. His research focuses predominantly on dementia ethics and public health philosophy. He is particularly interested in understanding the multifarity of ethical issues in dementia and how the use of literature can be used to aid ethical decision-making. Recently, his work has been focused on developing a specified intervention using narrative medicine to contribute to promote ethical self-efficacy of people with dementia, family caregivers and health care professionals.

Signe Nørgaard is a research assistant in the research group on mental health, National Institute of Public Health, University of Southern Denmark. She works in the intersection between sociology and health studies primarily within the area of mental health. She holds a Master in Sociology from the University of Copenhagen, and her interest lies within sociology of ageing and how promote and provide a more dignified care for people with neurodegenerative diseases. She has especially been preoccupied with dementia and how literature might be used to improve care.

Sigurd Lauridsen is head of the research group on mental health and associate professor at the National Institute of Public Health, University of Southern Denmark. He is research manager of the project DEMENTIA ID and his research focus is on mental health and ethics in dementia care and more broadly on care of people with a chronic illness. He is especially interested in investigating how to deal with ethical dilemmas that emerge when people with dementia gradually lose their autonomy.

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