Mapping of existing knowledge

Tasks

T1.1: Narrative overview of scientific literature on ethical dilemmas in dementia care and of existing ethical frameworks. The WG manager, with relevant members of the WG, will coordinate the search of literature in relevant databases such as PubMed, CINAHL, ResearchGate etc., as well as grey literature accessed through searches and the snowball method. Narrative overviews focus on creating a quick overview of existing literature. They are far less demanding to carry out than, for example, systematic reviews. The aim of the narrative overview is to provide a thorough but rapid understanding of the existing literature on the subject that can inform the process of developing a proposal for a practical ethical framework on how to deal with ethical dilemmas in dementia care25.

T1.2: Assessment of existing ethical frameworks dealing with ethical dilemmas in dementia care. The aim of this task is to evaluate existing ethical frameworks, identified in the narrative overview, focused on dementia care, in order to determine which components to integrate into the proposal EDEM plans to develop. The assessment will be coordinated by the WG manager and take place at the consecutive meetings in WG1.

T1.3: Synthesise and analyse findings from T1.1 and T.1.2 to asses ethical principles and frameworks, including to which extent principles and frameworks have been implemented and their resulting impact.
Combined, T1.1, T1.2 and T1.3 will constitute an inventory which WG3 can draw on in developing a proposal for a practical European framework and recommendations on how to implement it.

Activities

• Members of the WG will meet twice a year for the duration of the WG.
• At one of the first meetings, a research plan (research design and timetable) for conducting the narrative overview and assessment of existing ethical frameworks will be developed.
• The WG will comprise three scientific workshops (SWS) and include their results in WG meetings: SWS1 focuses on delineating the design of, and assigning responsibilities for writing, the narrative overview. SWS2 focuses on discussing a first draft of the narrative overview. SWS3 focuses on assessing ethical frameworks identified through the narrative overview.
• The WG will initiate two STSMs that will link Early Career Investigators and senior researchers in discussions of relevant ethical principles and precedent European frameworks.
• The WG will disseminate its findings to WG3 and WG4. This will enable them to incorporate the findings in developing a practical European framework and recommendations for how to implement it.

Milestones

M1.1: Pre-startup WG meeting with appointment of WG1 Chair, roles and structure. (ITC members will be encouraged to assume a leadership position as WG Leader or STSM Coordinator) (Y1Q1) M1.2: Development of research plan (Y1Q1)
M1.3: Narrative overview of relevant scientific literature (Y1Q2-Y3Q2)
M1.4: Assessment of existing ethical frameworks (Y1Q2-Y3Q2)
M1.5: Advertise, engage & establish 2 STSMs (one each under M1.3 and M1.4) (Y2Q1, Y2Q3) M1.6: Bi-annual WG meetings (Y1Q2, Y1Q4, Y2Q2, Y2Q4, Y3Q2)
M1.7: Three scientific workshops analysing findings from M1.3 and M1.4. (Y1Q2, Y1Q4, Y2Q2) M1.8: Annual and final reports of WG progress (Y1Q4, Y2Q4, Y3Q2)

Deliverables

D1.1: A narrative overview of the scientific literature on ethical principles in dementia care
D1.2: An assessment of existing ethical frameworks dealing with ethical dilemmas in dementia care
D1.3: 2 Summary reports or publications based on STSM activities