Participants involved in decision-making in the care network of a person with dementia: a longitudinal multi-perspective qualitative study

Abstract

Title. Participants involved in decision-making in the care network of a person with dementia: a longitudinal multi-perspective qualitative study. Background. Dementia is characterized by a long-term illness trajectory, in which multiple participants together make decisions for the situation of the person with dementia. An overview of which participant is involved in which decision(s) is missed. Aims and question. Identify which participants are involved in decisions taken in the care network of people with dementia. Which participants are involved in decisions taken within the care network of people with dementia? Method. Ten care networks, consisting of the person with dementia, two informal caregivers and two healthcare workers, were purposefully selected based on gender, whether or not having a partner and stage of dementia. All participants were interviewed three times with an interval of six months (N=144 interviews). The generic qualitative research method was used (open coding and constant comparison). Results. The involvement in decisions can be explained by four categories. The category ‘informal directly involved’ (1) include the person with dementia, spouse, immediate family or acquaintances who are regularly and closely involved. The category ‘formal directly involved’ (2) include participants regularly and closely involved from an institution or organization. The category ‘informal indirectly involved’ (3) include immediate family or acquaintances involved on a distance. The category ‘formal indirectly involved’ (4), include participants incidental involved from an institution or organization. Conclusions. The person with dementia and primary informal caregiver are involved in almost all decisions, whether or not supported by the informal direct, formal direct and formal indirect network. The Informal indirect network seems to be not involved in decisions. Recommendations. Healthcare workers should, together with the person with dementia and informal caregiver(s), create a balanced distribution of involvement by using the network.