Determinants of Mortality and Causes of Death in Patients With Dementia and Very Severe Challenging Behavior

Abstract

Objectives

To gain insight into the mortality over time of patients with very severe challenging behavior in dementia when they are temporarily admitted to highly specialized units for treating the behavior.

Design

Observational study.

Setting and Participants

Eleven highly specialized units throughout the Netherlands participated from December 2020 until December 2022, with a follow-up in September 2023, with 127 patients participating.

Methods

General clinical characteristics were collected, such as demographics and cognitive functioning, behavior during the first 2 weeks assessed by the Cohen-Mansfield Agitation Inventory (CMAI) and the Neuropsychiatric Inventory Questionnaire (NPI-Q), date of death, and cause of death. Two Cox regression models were estimated, namely prediction models to describe the relationship between some (regular) determinants and mortality over time and association models between behavioral factors and mortality.

Results

Of the 127 participants, one-third died during their stay. The most prevalent causes of death were dehydration (often with cachexia) and pneumonia. Mortality over time is best predicted by age (ie, being 80 years or older) and the number of non-psychotropic drugs, as a proxy for somatic disease burden. The 10% of patients scoring highest on the CMAI factor of physically aggressive behavior had a ninefold increased mortality risk during their stay.

Conclusions and Implications

A considerable number of patients with very severe challenging behavior in dementia admitted to highly specialized units died during their stay, with a ninefold increased mortality risk over time found in patients with very severe physical aggression. This underlines the need to devote attention to suitable terminal palliative care in clinical practice and research in this patient group.