In our modern society people with dementia live at home longer and participate in society longer. However, when people suffer from dementia their decline in cognitive functioning may lead to loss of the ability to look after themselves, without simultaneously leading to the loss of the desire to do so. This may lead to unsafe situations, while increasing their safety might lead to infringement of their their freedom of movement. Freedom of movement is valued increasingly in the care for people with dementia and resistance to restrictive measures is great, as is shown in new legislation (the Act on Care and Constraints). However, the value of safety remains important. In order to ensure safety, modern technologies are applied that simultaneously may restrict freedom but may be felt as improving freedom. While using these technologies in individual care for people with dementia, we need to recognize the importance of both freedom of movement and safety and find a value-based balance for individual care recipients. The new law tries to address this concern but may easily lead to a checklist controlled work process, where caregivers may perceive their professional responsibility as transformed into a responsibility towards an external body of control, be it the institution, the Inspectorate or the law. The procedural approach, the shift in responsibility and the obligatory involvement of experts from outside the organization, may lead to situations in which the professionals themselves will feel and assume less control. This would be an undesirable development since moral sensitivity in the formulation of the care plan is essential to finding a good balance between the relevant values. Using an empirical ethical approach, we will explore the values and arguments of all stakeholders and study how these are identified, labeled and weighed in concrete situations for individual persons. Aim of this project is to support care workers and relatives by developing a tool that will help to keep balancing the essential values and arguments concerning freedom and safety, and that will facilitate care teams to truly weigh the interests at stake, helping to reach optimal agreement with clients and family. We provisionally call this innovative tool a ‘Value ladder’ and we expect it to be a sort of composite list of related values and considerations at stake. The ‘Value ladder’ will serve as a blueprint and can be attuned for application for each individual person, and adapted when the situation of that person has changed. Of course the method of moral deliberation provides a way to discuss complex or urgent care dilemmas. This method however, due to its time-consuming character, is often reserved for exceptionally problematic situations. The ‘Value ladder’ is innovative, also compared to moral case deliberation, because it enhances the attentiveness of caregiving professionals to the balancing of values and interests, in order to avoid routine and procedure taking over. The tool is especially relevant for home care teams, who need quick and flexible methods to facilitate this balancing of values. It may be used in face-to-face contact with fellow stakeholders, or in teleconferencing.
Using the Value ladder, caregiving professionals and relatives will be able to react earlier on in the care process to circumstances of diminishing safety and increasing worries about the care needs of those entrusted to their care. The tool will guarantee the moral perspective of the care recipients themselves to be given full attention and, as a consequence, the application of restraints and coercion may be postponed or sometimes turn out not to be needed.
Close cooperation with the field partners from the Learning Network, benefits this project in three ways. The organisations participate in institutional care and in home care. Cooperation ensures access to all stakeholders, care recipients and their relatives, caregiving professionals, as well as care managers, directors, location managers and other health care professionals. Secondly, frequent contact with all stakeholders ensures the development of the tool to be an iterative process. In all stages of development the tool can be presented, tested and tried. Thirdly, the field partners joined the Learning Network because they want to further advance the quality and potential of the care they offer. This commitment maximizes the chances for the best results of the project. All in all this project promises both to yield a new approach to keep moral considerations at the centre of the process of devising good care, and to make sure the new legislation leads to true improvement of the care for vulnerable people with dementia living at home or in a care institution.