Navigating resistive behavior that adversely affects the intake of food and fluids in people living with dementia: A multiple case study

BackgroundPeople living with dementia can develop resistive behavior during eating and drinking, complicating food and fluid intake.ObjectiveThis study aimed to explore how relatives and healthcare professionals navigate care decisions, and to identify possible ethical dilemmas related to decision making and the impact on all involved.MethodsA qualitative multiple case study was conducted, nested in a prospective study. We identified cases where resistive behavior was observed in a person with dementia. We aimed at interviewing at least one relative and three healthcare professionals closely involved with a specific case. The interviews were transcribed verbatim and analyzed thematically.ResultsA total of sixteen cases were eligible, of which five cases were included. Four cases concerned people residing in a nursing home, and one person was living at home. Three themes were identified from a total of sixteen interviews: 1) fundamental tension between autonomy and adequate nutrition, 2) understanding the person with dementia and the resistive behavior, and 3) solutions: searching for a personalized approach. This study contributes to the understanding of decision making in situations involving resistive behavior that adversely affects the intake of food and fluids.ConclusionsThe findings emphasize the importance of a personalized approach that balances autonomy, quality of life, and adequate nutrition to provide the best care for people with dementia. The perspectives elicited in this study can help multidisciplinary teams to navigate this complex decision-making process.