User participation in dementia care is a complex issue. Above, we saw how persons with dementia too often are excluded from participation in decision-making processes concerning their own care (Cahill, 2018; Smebye et al., 2012; Taghizadeh Larsson &
Osterholm, 2014). Based on the participants’ descriptions of the complexity of the home and how details in support might have unforeseen consequences, we emphasized in article 1 and 2 the importance of increased user participation in dementia care (Fæø, Bruvik, et al., 2020; Fæø et al., 2019). This view is also in line with extensive research emphasizing autonomy, independence and agency as crucial for persons with dementia in order to experience dignity, quality of life and sustained personhood (Bosco et al., 2018; Gorska et al., 2018; Hedman et al., 2016; Kitwood, 1997; O'Rourke et al., 2015; Tranvag et al., 2016). The interpretations of our findings concerning this issue can, however, be questioned. Indeed, one of the participants in article 1 described how she hoped her family would be able to take action if they should see that it is no longer safe for her to remain at home, in case she is unable to
judge this by herself (Fæø et al., 2019). The descriptions of participants being able to turn initial reluctance towards support into possibilities can also be interpreted otherwise (Fæø, Bruvik, et al., 2020). What if they had not been able to see these possibilities? What if a representative from the municipality does not have the needed time, patience and skills to engage the persons in reflecting on these possibilities?
Should the persons’ reluctance be accepted and the support not given based on a principle of user participation and autonomy?
Through interviews with seven persons with dementia, Haugen, Ytrehus and Slettebø (2018) describes a high degree of individual variations among the participants’ views on this topic. These ranged from feelings of lost independence and frustration over others making decisions, to being content by leaving decisions to others for fear of making mistakes. In a systematic review on shared decision-making, Daly et al.
(2018) found that for some, taking part in the process may be as important as making the decisions themselves. This matches the findings of Smebye et al. (2012) on how persons with dementia might leave decisions to others, whom they trust. An
arrangement that is also regulated by legal arrangements (Guardianship Act, 2010).
4.4.1 Legal regulations and human rights concerns
In line with these views, it is possible to transfer legal authority on certain issues, such as personal economy, to others. An expanded legal authority can also be delegated by legal authorities, or the person with dementia to a certain person, giving expanded economical rights and the right to apply for or formally complain about services, formal resolutions and so on (Guardianship Act, 2010; Norwegian Civil Affair Authority, 2020). Similar regulations, although with some variety, are common in most western countries (Cahill, 2018; Gallagher et al., 2012). In line with the regulations of exception from the laws regarding consent, the purpose with these regulations is to safeguard that persons with challenges related to understanding information, making informed decisions or administering economical and legal issues, are not subject to harm or maleficent incidents because of reduced functioning. An issue does however arise when compliance to these regulations excludes persons with dementia from information and taking part in decision-making
processes (Cahill, 2018; Smebye et al., 2012; Taghizadeh Larsson & Osterholm, 2014). Practices that are further held up by the still widespread stigmatization of persons with dementia (Behuniak, 2010; Haugen, Slettebø et al., 2018).
The United Nations Committee on the rights of persons with disabilities signals contempt towards practices of holding back information or denying opportunities of participation in decision-making processes (Committee on the Rights of Persons with Disabilites, 2014). A major contribution to enlighten these issues is the inclusion of dementia as category of ‘disability.’ This entails that dementia should be treated as equal to any other disability. Meaning, for example, that although dementia can lead to challenges in participating in decision-making processes, these are challenges to be overcome; the person should not be automatically excluded (Cahill, 2018).
Generalized tests, scores or conceptions to assess a person’s ability to consent is deemed as contributing to ‘lowering his or her status as a person before the law’
(Committee on the Rights of Persons with Disabilites, 2014 para.15). In situations where participation is challenging, healthcare personnel have a duty to support and empower the person to become able to participate as far as possible. Violation of this principle is considered a breach of human rights. Accordingly, Smebye et al. (2012) claims that the question on this issue should not be if the person is able to participate and consent, but how to make the person able. When aiming to empower persons with dementia in decision-making processes, this question is essential.
4.4.2 Empowerment and the ethical demand
Human rights defines the right to participate as an absolute right (Committee on the Rights of Persons with Disabilites, 2014), and a starting point should be in treating it as such. I will, however, argue that applying this principle without question will be a serious sin of omission. A central point of criticism of the empowerment concept in its wider use within healthcare is the risk of an abrogation of responsibility: as the patient is deemed the expert, the healthcare personnel should not impose their views on the other. This may in turn lead to the healthcare personnel refraining from recommending adequate care or treatment, or warning against potentially inexpedient choices, based on a misunderstood respect for the others autonomy (Thornquist,
2009). When applying the concept to dementia care, where the persons may have challenges understanding and resonating, I will argue that the concept should be handled with care. As the term user participation implies, it is relational in nature; it is about taking part in the processes. Hence, McConnell et al. (2019) emphasize respecting the persons, giving them a voice and involving them, in their definition of empowerment for persons with dementia. Similarly, Groen-van de Ven et al. (2018) suggests a gradual accommodation in the involvement of the persons with dementia, allowing them to participate according to their strengths and remaining resources.
According to the views of Martinsen (2006) and the tradition she represents,
healthcare personnel have a responsibility to use their knowledge to care for the other as an answer to the ethical demand that comes forth in the singular situation. The care and support should, however, not be enforced on the other, but offered and explained through an open dialogue. This view may be helpful in meeting some of the
dilemmas concerning consent as described earlier. Justifying forced treatment based on a superficial assessment of ability to consent should be avoided. Conversely, not giving necessary healthcare because the patient opposes, does not understand or simply does not ask is an abrogation of responsibility. There are many ways to involve persons with dementia in decision-making processes – and many different processes that require decision-making – and the persons themselves may have differing wishes and expectations when it comes to this (Haugen, Slettebø, et al., 2018; Smebye et al., 2012; Taghizadeh Larsson & Osterholm, 2014). Thus, providing care and support to persons with dementia is a task that requires openness, judgment and the ability to grasp and explore the complex ethical demands that arise in the meetings with these persons (Martinsen, 2006, 2012). In many ways, the
coordinators’ leader sums up these views, in article 3, when she described how she would like to hand-pick coordinators, because they ‘have so much impact on people’s lives’ (Fæø, Tranvåg, et al., 2020). With Gadamer (2013), we might say that going into this kind of work requires tact.
4.4.3 On finding the other
As a measure to involve and empower the persons with dementia, a central question in the LIVE framework is ‘what’s important to you?’ (Husebo et al., 2020). In article 3 we found how the coordinators found that the answer to this question was not necessarily found in the participants’ answers to the question (Fæø, Tranvåg, et al., 2020). Rather, the coordinators described how they found an answer to this question in the stories the participants told about their lives. Within the tradition of person-centered care, focus on the person’s life story has been important. Based on interviews with 11 nurses and 12 healthcare assistants, Cooney and O’Shea (2019) add to this focus that this entails more than knowing the persons life story. The story also needs to be understood in order to impact how the personnel should care for the individual person with dementia. This is in line with the care philosophy of Kari Martinsen (2006). Simply mapping out and gathering information about persons in order to categorize is, in itself, of little help. Although the coordinators in the intervention had little contact with the persons with dementia, they described listening to their stories as crucial in order to ‘get to know their pulse a little’ (Fæø, Tranvåg, et al., 2020).
According to Martinsen (2006), it is by meeting the other with openness and curiosity that one can be aware of who the other is, and what the other truly needs. This need not exclude the person’s life story as told by informal caregivers, nor gather
information about the persons function through assessment forms. It does, however, urge healthcare personnel to continue being curious and open about what the gathered information can tell, but not least, what the persons with dementia may tell
themselves. In this process, one should also be aware of the persons’ zone of untouchability’ (Martinsen, 2012), that is, what areas of the person’s life one should not explore, at least not before sufficient trust has been built.