Severe behavioral and psychological symptoms of dementia: a clinical ethics study of cognitive-behavioral units in France

Abstract

Background. In the last 20 years, cognitive-behavioral units (CBUs) have been opened in various countries to provide care for patients with Alzheimer's disease and related dementias who experience severe behavioral and psychological symptoms of dementia (BPSD). Objective. This study examines the perspectives of relatives and healthcare professionals caring for patients in three CBUs in France and highlights key issues in clinical ethics. Methods. Using the commitment model (a qualitative methodology in clinical ethics), we conducted 154 semi-structured interviews between March 2019 and March 2020, which were subsequently analyzed thematically. The study focused on three CBUs: one in a public hospital and another in a private hospital in the Paris region, and one in a public hospital in the Hauts-de-France region. We interviewed 62 individuals, including 25 relatives and 37 healthcare professionals. Some of the professionals were interviewed several times about their experience with the 30 patients included in the study (18 men and 12 women, average age 79 years). Results. Three key themes emerged from the interviews: 1) general appreciation for the relational approach adopted in the CBUs, 2) concerns regarding the limitations of care, and 3) distress regarding restrictions to patients' personal freedom. Conclusions. CBUs are a promising and welcome initiatives but would benefit from a reconsideration of cultural approaches to care for older people with BPSD. End-of-life care, interprofessional collaboration and respect for autonomy need to be more thoroughly discussed. In doing so, CBUs could act as catalysts for public debate on the accommodation of people with BPSD.