Very severe challenging behavior in dementia: pioneering for well-being in highly specialized units

People with dementia and very severe challenging behavior can be temporarily admitted to highly specialized units when living in a regular long-term care setting is not possible. The aim of this study was to gain more insight into the organization, treatment, and outcome of treatment in these units. Substudy 1 investigated organizational and treatment characteristics using digital questionnaires, interviews, and observation. This was analyzed using thematic and descriptive statistical analysis. Substudy 2 was a concept mapping study in which a visualization was calculated using input from 82 experts on what comprises successful treatment. Substudy 3 was an observational study in which 127 patients were followed from admission to discharge or death: demographics and behavior were described. Mortality was explored using Cox prediction and association models. Substudy 1 showed that specialized departments were pioneering and exhibited strong heterogeneity in terms of organization and treatment. Nevertheless, similarities were found in the role of the nursing staff, intensive multidisciplinary treatment, and attention to sensory stimuli. Concept mapping identified three overarching clusters of successful treatment: 1) well-being, 2) multidisciplinary analysis and treatment, and 3) attitude and skills of those involved. The observational study showed that one-third of participants died during admission. For patients with very severe physical aggression, the risk of death was nine times higher.