Working in a gray area—Healthcare staff experiences of receiving consent when caring for persons with dementia

Introduction

The prevalence of dementia in Sweden is approximately between 130 and 150,000, with an incidence of 20–25,000 persons per year (National Board of Health and Welfare, 2018). Many persons with dementia live in their homes and manage their daily life independently or with support from relatives. In Sweden, persons with dementia in need of help, support and social care can receive either home care or residential care by formal caregivers, after an assessment by needs assessors i.e., social workers. Healthcare is mostly decided by a team of healthcare professionals. The municipalities are responsible for the care of older persons including both social care (SFS, 2001: 453) and healthcare (SFS, 2017: 30) and this involves staff from various professions. Nursing assistants work closest to the person with dementia and can help with performing household tasks (cleaning, shopping, laundry and cooking), assist with personal care (bathing, dressing and mobility), and basic medical issues (administrating prepared medications) (Szebehely & Trydegard, 2012). Most nurse assistants have a 3-year high school education and they are one of the largest staff groups in the entire Swedish labor market (Szebehely et al., 2017). Registered nurses, occupational therapists and physiotherapists are responsible for making assessments and providing health care, assistive technology as well as rehabilitation for older persons, whereas first-line managers have the responsibility for social services, staffing and finances in the care units. All of these positions require a university education (Swedish National Agency for Education, 2011).

Dementia is a progressive disease that usually brings losses of different cognitive abilities, particularly in being able to interpret and understand the environment. The person with dementia may also have decreased capacity to express their own desires, to understand information and to use received information as part of their decision-making process, as well as being unable to communicate their wishes, requests, and choices (Eriksson, 2012; Wangmo et al, 2019). Difficulties in different situations requiring decisions may arise since decisions in care should be made based on the person’s autonomy and this assumes that the person has the capacity to act deliberately (Groen-van De Ven et al., 2016; McCormick, 2021). These decisions may include issues regarding medical treatments and social situations in everyday life (Hamann et al., 2011; Samsi & Manthorpe, 2013; Wolfs et al., 2012). Obtaining shared decision making requires collaboration between the staff and the person with dementia where the person is supported in making decisions about their own life and their values and preferences are incorporated in care (Geddis-Regan et al., 2021). It also means that by Swedish law family members or intimate others are not allowed to serve as substitute decision-makers. It is only the persons themselves that can make decisions concerning their life (SFS, 2001:453). For informed consent to be valid, it should be preceded by the person being informed of the action, the meaning of it and what happens if the action cannot be done (Tunzi et al., 2021). Since dementia results in the person having trouble understanding instructions and the meaning of words, difficulties in getting informed consent arise. Difficulties like these increase the risk of being subjected to restraints and coercive actions in different care contexts (Evans & Cotter, 2008; Moermans et al., 2018). When persons with dementia have difficulties in expressing their own will and preserving autonomy, it poses challenges. Autonomy is not just a mental process, being independent can also mean being able to adhere to certain habits and rules of your choice (Willems, 2000). Staff have reported that issues of consent and autonomy can increase ethical stress in everyday work (Hemberg & Hemberg, 2020; Ulrich et al., 2010; Wangmo et al., 2019). Staff sometimes have to balance what they consider to be good care and the person’s integrity and autonomy. This is especially true when the individual opposes care and assistance that the staff deem necessary (Hofmann & Hahn, 2014), and this can create situations where coercion and restraints are used.

Examples of coercion and restraints are bed rails, alarm mats, wheelchair lap tray, medicine hidden in food or drink, locked doors and forced nutritional intake (Hamers et al., 2016). Coercion and restraints are often used as preventive measures to protect a person, for example from falls and injuries (Hofmann & Hahn, 2014). Studies show that the risk of staff using coercion and restraints occurs both in residential care and in home care (Beerens et al., 2014; Hamers et al., 2016; Scheepmans et al., 2018, 2020). Between 5% and 25% of older persons in ordinary housing (Scheepmans et al., 2018), and 6%–31% (Feng et al., 2009) in residential care, have been exposed to coercion and restraints, respectively, with a higher prevalence among persons with dementia (31%–64%) (Pu & Moyle, 2022). A Swedish study indicated that the use of coercion and restraints has increased between the years 2000 and 2007 (16% and 18% respectively) (Pellfolk et al., 2012).

Up until year 2010 there were regulations and guidelines on how restrictive actions could be used in Swedish social care (SOSFS, 1992:17). There has been no substitution by new law, but according to the Swedish Constitution (SFS, 1974: 152) every person is protected from deprivation of liberty. This applies to persons in all contexts, including within healthcare and social care, meaning that care actions should not be used against the individual’s will, but must be voluntary. Furthermore, each person has the right to autonomy and to decide how care should be provided (SFS, 2017: 30; SFS, 2001: 453), and home care and residential care must be provided with the consent of the individual (Brodtkorb et al., 2015; National Board of Health and Welfare, 2017). Without consent to actions, there can be negative outcomes for the individual, including physical (e.g., constipation and incontinence, ulcers), psychological (e.g., anger, negative self-esteem) and social (e.g., social isolation) consequences (Hofmann & Hahn, 2014). Thus, staff should strive to obtain consent and avoid the use of coercion and restraints. In the care of persons with dementia, this means that all efforts should be based on a person-centered approach (National Board of Health and Welfare, 2017). This is a holistic perspective focusing on the person behind the disease and involving the person in the care and sharing decisions as well as adjusting care in accordance with the needs of the individual in order to maintain wellbeing and quality of life (Edvardsson, 2015).

To summarize, without consent there can be many negative consequences and so persons with dementia should not be forced into actions during care. However, care without consent exists and coercion and restraints are being used. To improve care, further knowledge is warranted. The aim of this study was therefore to explore staff experiences of obtaining consent when caring for persons with dementia.

Method

Study settings, and sample and data collection

The interviews were conducted during fall 2018 and spring 2019 with staff caring for persons with dementia in different municipal care settings as participants. All data were collected in one municipality with approximately 140,000 inhabitants including approximately 2200 persons with a dementia disease (National Board of Health and Welfare, 2014).

Convenience sampling was used where staff were identified and asked about participation by their managers. Health care professionals working both in residential care and home care were included in the sample. Two groups included nurse assistants in dementia care units, three groups included nurse assistants in home care, three groups included nurse assistants in residential care, one group included needs assessors, three groups included registered nurses and allied health professionals and two groups included first line managers. In focus group interviews it is preferable to have small groups, giving everyone the opportunity to speak (McLafferty, 2004). In total the focus groups interviews included 63 staff with 2–7 persons in each group (Table 1).

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Table 1.

Participants’ characteristics.

Occupation	Number of participants	Years in the profession*
Occupational therapists	2	18–30 years
Needs assessors	3	1.5–30 years
First line managers	11	3 month–17 years*
Physiotherapists	1	2 year
Registered nurses	5	1–25 years*
Assistent nurses	41	6 month–40 years

*some of the participants did not give exact years in profession meaning there is some missing data.

An interview guide was developed within the project group to capture staff experiences of coercion and restraints being used based on earlier knowledge of the phenomena. One interview question focused particularly on consent: How does the process of obtaining consent from the individual take place? Other examples of questions asked were: Can you give a recent example where you have worked with coercion and restraints? How can the use of coercion and restraints be prevented? All questions were open-ended and the participants were encouraged to discuss them as is the practice in focus groups (McLafferty, 2004). A pilot interview with the dementia team in the municipality was first performed to test the interview guide. Based on the pilot interview, only minor adjustments were made to the questions to better fit the purpose and to be clear to participants.

Two researchers participated in each interview which is in accordance with usual practice in conducting focus groups interviews (Krueger & Casey, 2015). One had the function of a moderator and led the discussion and ensured that all participants were given an opportunity to speak. The other researcher served as an assistant and was responsible for recording the interviews. At the end of each interview, the assistant also summarized what had been discussed to make sure that everything was understood correctly and asked if the participants wanted to add or change anything. All three researchers were involved in collecting the data. The length of the interviews varied between 60 and 90 min as agreed.

Data analysis

Each focus group interview was recorded and transcribed verbatim. An inductive qualitative data analysis was then performed to condense and abstract the collected interview data (Lindgren et al., 2020). The analysis started with all researchers reading the transcript carefully a couple of times to get an overall impression of its content. With regard to the aim, meaning units were then highlighted so that important text from the interviews related to staff experiences about consent were identified. Most of the meaning units identified were relatively long with more content than usual for meaning units, which was done in order to illustrate this complexity in a thorough way (Lindgren et al., 2020).

All identified meaning units were entered on a spreadsheet and de-contextualized into codes, i.e., each meaning unit was given a label describing its content. An abstraction was then performed where similar codes were put together and labeled based on their content, which created subcategories. This was a way to re-contextualize the content where we interpreted which groups of codes were interrelated and which were not (Lindgren et al., 2020). The researchers (LÖ and LJ) discussed the identified patterns among the subcategories and performed a grouping into categories by abstraction (Table 2). The analysis was then presented and discussed with the third author (MEB) to confirm the findings. In the next step, all three researchers once again reflected on and discussed the subcategories and categories to reach agreement. In this step, the subcategories and categories were further refined, and the final findings determined.

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Table 2.

Examples of the data analysis.

Meaning unit	Code	Subcategory	Category
She had come so far that it was not possible to reason with her. Instead, we had to try and see how she reacted to the [door] alarm. She lives with her daughter.// When she [the mother] became angry and pulled off the alarm then we couldn’t leave it on. Because then she showed that she didn’t want any alarm on the door (Healthcare staff, group 2)	Remove sensor alarm after the person expressed disapproval by pulling it off	Interpret the person’s behavior	The person as the decision-maker
With some things you can’t really determine what the person really thinks [about it]. Or if (s)he is just resigned to the situation within her(him)self. (First line manager, residential care, group 3)	Difficulty in really knowing if the person gives consent.
It’s really important that when they say “no, I don’t want that supervision” then you can solve it in different ways. If they live on the ground floor, then you can check a little from outside and you can listen at the door and you can open gently without them noticing. So, you can still do a little extra then, but you shouldn’t force yourself on [the person]. Because it would just be wrong and they might become more worried. (Nurse assistants, dementia care unit, group 4)	Identify other ways to provide supervision if the person has refused an action.	Identify alternative solutions

Results

The analysis revealed three categories describing staff experiences of consent in dementia care: the person as the decision-maker, the staff as decision-makers, and the viability of the consent. The categories and associated subcategories are presented in detail below and in Figure 1.OPEN IN VIEWER

Overall, staff found it difficult to know if they really had consent from the individual. Even if the person verbally gave consent, it was challenging to know if the person really understood what they had consented to. Also, a person might consent on one occasion but not on the next. For non-verbal persons, the staff interpreted facial expressions and body language, with the risk of misinterpretation. This was especially true when staff did not really know the person.

Common in all three categories was the significance of the relationship between the person with dementia and the staff member. Staff talked about how important it was to build a relationship in order to get to know the person, to recognize the person’s facial expressions and body language, and to be able to explain and justify specific actions to the person. Meeting the person on a regular basis was stated as important, as it takes time to get to know the person. Having a close relationship was considered to be a success factor in obtaining consent as well as important when trying to identify other solutions:

“If you know the person well, you can interpret their body language and you can see in their eyes and their behavior even if they are unable to say something.” (Nurse assistants, dementia care, group 4)

Discussion

The results provide an insight into the complexity of obtaining consent when working with persons with dementia, in particular because the viability of consent was unclear as it continuously changes. To work in accordance with the wishes of the person it was therefore important to build a relationship. Either the person with dementia, or staff, was described as the decision-maker. The person as the decision-maker established that the wishes of the person were guiding the care actions and that the staff therefore needed to interpret what the person wanted. Staff as decision-makers showed that if the staff did not get verbal consent, they did what they considered to be preferable and then tried to convince the person to accept the actions.

This study reveals the difficulty of obtaining consent from persons with dementia, including not knowing if a person has really understood information as well as for how long consent is valid. There are few studies on how decision-making takes place in connection with coercion and restraints and the knowledge about how consent is obtained is limited (Pu & Moyle, 2022). For a person with dementia, it may be difficult to have an overview of one’s decisions and consider what will be best for them (Nedlund & Taghizadeh Larsson, 2016). In our study, staff expressed that they wanted to do what was best for the person but at the same time this was difficult as the person might give consent at one point but a moment later refuse the action. A reason for this is related to the symptoms of dementia, i.e., loss of cognitive functions such as the ability to interpret and understand the environment (Nedlund & Taghizadeh Larsson, 2016). Changes in consent could also be due to the feeling of not being allowed self-determination. For staff to facilitate consent, it is important to treat the person with respect and to share decision-making (Ericsson et al, 2013). However, results from a Swedish study among older persons in residential care revealed that they did not always experience respect or feel valued which sometimes resulted in anger or resignation (Hellström & Sarvimäki, 2007). Furthermore, Brodtkorb et al. (2015) found that when a person resists an action, this can lead to an emotional reaction in the staff member and risk resulting in a stressful situation for both staff and the person with dementia. As a result, staff sometimes instead made decisions without actually having consent from the person and this resulted in the use of coercion and restraints. This, not taking the wishes of the individual into account when providing care, can be considered to be manipulative behavior by the staff (Brodtkorb et al., 2015). In practice, it is rather common that staff act as deputies and make decisions for the person, even though neither the staff nor relatives can legally act on behalf of persons with dementia in Sweden. Additionally, if staff does not fully know the person, it may result in staff making a decision that does not correspond to the person’s will or wish. This situation makes the person with dementia more vulnerable. It is therefore of great significance that the person that acts as a deputy is someone who knows the person with dementia well. This can ensure the deputy safeguards the person’s norms and interests, as well as having a better understanding about what decision the person would probably have made him/herself (Sulmasy & Sulmasy, 2015).

The staff also state that they sometimes use different methods of convincing to gain consent to actions from the person. Staff indicated that this was not the ideal way of working, but when caring for persons with dementia situations sometimes occurred where all options to respond could result in negative consequences. In professional ethics this approach is not generally accepted. In the context of care, ethical principles need to be evident to guide care and there should be an expectation that ethical principles will be followed. For example, care should not harm, and everyone should have the right to equal care including the right to decide and give their consent on care actions (McCormick, 2021). Yet, from a clinical point of view the staff in this study expressed that following ethical principles all the time can be complex as they felt that they did not always find any solution to provide good care. Tunzi et al. (2021) discuss that informed consent is mostly understood as an all-or-nothing phenomenon when thinking about it in relation to the meaning of autonomy but argue that getting consent ranges along continuum from formal informed consent through assent to non-dissent. Assent can be understood as when the person express approvement to a recommend action. It can be used in common actions where the person needs to be given some information about the action in order to consent. Non-dissent can be used for multiple actions that are routine actions of care and it can be interpreted as consent if the person does not reject the action. To give information is the core practical challenge when working with persons with cognitive impairments, the process of receiving informed consent is not an easy task and sometimes not even possible. However, staff should make sure that the person is given the opportunity to maintain their autonomy and share decision-making as much as possible, which can be done by supporting relationships and interdependence. When a relationship is established, it will facilitate moving assent closer to full informed consent. But assent could also be weakened in a transition to non-dissent (Tunzi et al., 2021), for example if a person nods to give assent but after a short while shows a facial expression of non-dissent.

Working conditions may act to increase the risk of negatively affecting the autonomy of the person. For instance, staff may lack time to wait for answers from the person or to find alternative solutions when the person says no to an action that the staff deem necessary. To manage such situations, staff need to be aware of their own ethical positions and make assessments and reflect (Scheepman et al., 2018). Beneficence is one of the four ethical principles that Beauchamp and Childress (2009) discuss, focusing on how to minimize risks for the person and also weigh risk against benefit. To work according to this principle, staff need to balance giving the person benefits without inflicting any harm (McCormick, 2021). Protecting patients’ rights; autonomy and informed consent are examples of stressful ethical care issues that care staff encounter frequently, even daily. This frequency of ethical care issues is often related to understaffing and organizational problems. Without adequate staffing, there are difficulties in meeting the ethical standards. Today’s healthcare system in Sweden has inappropriate demands to provide high quality care and to manage costs with diminishing resources (Ulrich et al., 2010).

Edvardsson (2015) reflects on what is needed for ethical practice and states that it requires a true interest in the other person’s life and decisions as well as skills in systematic attention to and analyses of other’s wellbeing. In person-centered care, a core component is to see the person with dementia as a partner and involve the person in everyday matters (Backman et al., 2020; Ekman et al., 2015). Person-centered care starts with the experience of being present with another human being, trying to understand that person’s experience, and coming to know the uniqueness of the person (Molony et al., 2018). Furthermore, person-centered care entails recognition, trust, and respect, as well as prioritizing the experience of the person (Kitwood, 1997). Focusing on the person’s life story can assist staff to work in a holistic and person-centered way instead of focusing on performing a task, or solely on the disease (Gilster et al., 2018). This requires an organization that supports and motivates staff to apply a person-centered approach, including making sure that staff receive sufficient training and education (Kim & Park, 2017). Staff need continuing education, for example through mentoring, online material or written material, practical exercises, group reflection, supervision, drama exercises, and working with cases (Surr et al., 2017). Another tool is to give staff an opportunity to work with reflection teams where they can reflect on specific caring issues under the direction of a leader (Jonasson et al., 2017). According to a literature review by Rosoal et al. (2017) there are several approaches to support staff dealing with ethical issues in clinical practice. For instance, ethical rounds or ethical reflection groups can encourage staff to reflect over ethical issues. Such reflection can result in changed attitudes and increased critical thinking, and it can identify the best ways to act in certain cases. In this study, staff expressed that when they encounter a situation where they do not know how to act, support from colleagues with more experience is crucial. Using the skills that already exist among the staff who work closely with these persons is a successful way for staff to find solutions and thereby improve care (Jonasson et al., 2017).

In this study, staff talked about how important it is to establish a relationship in order to recognize and interpret the person’s facial expressions and body language, and to be able to explain and justify specific actions to them. Having a trusting relationship has also been highlighted in previous studies as significant in providing a sense of security for the person even if (s)he is not completely positive about an action (Hughes & Common, 2015; Karlsson et al., 2015). Continuity is needed to create a trustful relationship, where the same staff return to the same person and are thus given the opportunity to get to know each other (author blinded, 2020). To give the person with dementia a feeling of significance, Ericsson et al. (2013) discuss the importance of staff demonstrating that they have time for the person in order to make him/her receptive to staff’s suggestions. Accordingly, creating a good environment and relationship takes time. However, time is commonly lacking as a result of the stressful work situation staff are constantly experiencing (Shiells et al., 2020). Not only does time affect care outcomes, but also the professional caregiver’s attitudes and flexibility are of great importance (Ericsson et al., 2013; Gilster et al., 2018). This study revealed that there were certain situations where only one particular staff member was allowed to help a person to shower and to prevent coercive actions the team made sure that this person worked on the days for showering. This example again highlights that staff’s working conditions are a key factor influencing the relationship with the person with dementia and their ability to provide adequate care (Szebehely et al., 2017). Unfortunately, in Sweden the working conditions for staff in elderly care have deteriorated in recent times. In parallel with the deterioration in working conditions for staff, political ambitions regarding the need for improvement of elderly care and the rights of older people have increased. There is a clear trend towards person-centered care, which emphasizes the participation and self-determination of the elderly (National Board of Health and Welfare, 2017). There is a distinct discrepancy between the ambitions of the welfare state and the conditions of everyday work, and staff have expressed that they nowadays have more duties but less time since they care for more people, resulting in increased stress for staff attempting to provide adequate care (Szebehely et al., 2017). For clinical practice it is of great importance to create an organization where staff have the opportunity to build relationships and work in a person-centered way as well as increase staff’s different skills, as these are key components when working with consent and thus avoiding the use of coercion and restraints in dementia care. A Swedish public investigation conducted during the Corona pandemic identified several areas for improvement regarding elderly care including adequate staffing, satisfactory staff continuity and work environment, increased medical competence and more permanent employees. Continuous education for all staff is also called for, where ethical issues also need to be discussed (SOU, 2021: 52). Goh et al. (2022) found that, beyond education, good communication between the employer and the employee is needed regarding, for example, the information that the staff receives about the person they are going to help. If staff receive too little information, they do not know what is expected of them except for specific tasks to be completed. The staff also needs enough time to be able to help the person in a suitable way. Funding is linked to task completion and staff may feel that they are not given enough time to provide the best care. Another important factor in creating good working conditions is to ensure continuity, and that staff stay for a longer period. Since there are many temporary employees (working by the hour), staff can find it difficult to get to know colleagues and find a common working method that also means continuity for the persons with dementia that they are going to help.

The results of this study should be interpreted in the light of its strengths and limitations. When performing focus group interviews, there is no scientific consensus on the needed number of groups to get valid results. But Guest et al. (2017) for instance found that three to six focus group interviews will reveal approximately 90% of the categories. For this study, 14 focus group interviews were conducted, which included two to seven people in each group. Staff participated during working hours when they were able to leave work for approximately 90 min on the day of the planned interview, resulting in some focus group interviews having fewer participants. One of the key points of using focus group interviews is that the participants engage each other while expressing their thoughts and experiences (Krueger & Casey, 2015). In the groups with fewer participants, it is not always possible to get this dynamic happening, but the number of focus group interviews compensated for this, and the data was rich in participant experiences. Also, sampling participants based on availability can result in less variation and bias the results, i.e., negatively affecting the transferability of the study results.

Furthermore, the researcher’s pre-understanding of the phenomenon might have affected the process in this study as it could entail a risk of confirming expectations and reproducing truths rather than reconsidering and enriching current understanding. Using a project group consisting of both researchers and staff from the municipality when planning for the study also made sure it was relevant from a practical point of view. Prior understanding can also help to identify other things that otherwise risk remaining hidden (Alvesson & Sandberg, 2021). In addition, the authors’ (one social worker and two nurses) different experiences and knowledge about the phenomenon were considered to be a strength when analyzing the data.

Conclusion

Staff were aware that they needed consent to provide help, support and care for persons with dementia as it is otherwise considered to be coercion and restraint. At the same time, they stated that it is often difficult to know how to obtain consent because of the difficulty in knowing that the person has fully understood the situation and information. Ethical dilemmas therefore arose. Once a relationship has been established between the staff member and the person receiving care, it seems to become easier to understand and interpret the person’s signals and thus know if you have obtained consent. Consequently, it is important that staff are given the optimal conditions to work with consent including training and time for reflection. A person-centered approach can be one way to develop care and ensure that persons with dementia are treated with respect and allowed self-determination and to share in decisions. Persons with dementia are not a homogenous group, some live at residential care and some live together with relatives in their ordinary homes. Some are in an early stage in the disease while others suffer from later stages of the disease. In the future, more research is needed focusing on older persons’ own unique views on consent as well as the perceptions of the relatives.