Case managers' roles in the decision-making process within care networks of people with dementia living alone: a multi-perspective qualitative study

Abstract

Background: People with dementia and their care network have to make several decisions in daily life. Because of population ageing and replacement of institutionalized care to home care, more people with dementia are living alone. Decision-making in dementia concerns: multiple decisions, with several stakeholders, over a long-term period, in an ever-changing situation. Case managers are the important link in the care network of persons with dementia to involve them in decision-making. It is unclear what roles this professional uses in the facilitation of (shared) decision-making. Aim: Gain insight into the roles of case managers in the decision making process within care networks of people with dementia living alone in order to investigate how this can be facilitated in shared decision-making. Method: A multi perspective study using already available qualitative data for a secondary analysis. 71 semi-structured longitudinal interviews from five dementia care networks with people with dementia, informal caregivers and professional caregivers, were coded according to the principles of Grounded theory. Results: The different roles in decision-making can be explained by five themes who are used by all case managers during decision-making. Core theme of connecting shows an interactive process with the roles: expert, monitor and stimulator. Advocate’s role runs simultaneously through the process. Conclusions: The case manager uses different roles during decision-making to facilitate the decision-making process. These roles will be applied in greater or lesser extent in different dementia care networks and can be used as a first step in professionalization of case management and in the facilitation of shared decision-making in dementia care. Recommendations: Care professionals, care networks and care programs should be aware of the diverse roles of case managers’ that exist for involvement in dementia care networks for facilitation of shared-decision making.