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

Gerrie van Voorden; Richard C Oude Voshaar; Raymond T C M Koopmans; Sytse U Zuidema; Alex Verhemel; Anne M A van den Brink; Martin Smalbrugge; Debby L Gerritsen

doi:10.1016/j.jamda.2025.105713

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

J Am Med Dir Assoc. 2025 Aug;26(8):105713. doi: 10.1016/j.jamda.2025.105713. Epub 2025 Jun 25.

Authors

Gerrie van Voorden¹, Richard C Oude Voshaar², Raymond T C M Koopmans³, Sytse U Zuidema⁴, Alex Verhemel⁵, Anne M A van den Brink⁵, Martin Smalbrugge⁶, Debby L Gerritsen⁷

Affiliations

¹ Research Institute for Medical Innovation, Radboud University Medical Center, Nijmegen, The Netherlands; Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands; University Knowledge Network for Older Adult Care Nijmegen (UKON), Radboud University Medical Center, Nijmegen, The Netherlands; Radboudumc Alzheimer Center, Radboud University Medical Center, Nijmegen, The Netherlands. Electronic address: gerrie.vanvoorden@radboudumc.nl.
² Alzheimer Center Groningen, University Medical Center Groningen, Groningen, The Netherlands; Department of Psychiatry, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
³ Research Institute for Medical Innovation, Radboud University Medical Center, Nijmegen, The Netherlands; Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands; University Knowledge Network for Older Adult Care Nijmegen (UKON), Radboud University Medical Center, Nijmegen, The Netherlands; Radboudumc Alzheimer Center, Radboud University Medical Center, Nijmegen, The Netherlands; Joachim en Anna, Center for Specialized Geriatric Care, De Waalboog, Nijmegen, The Netherlands.
⁴ Alzheimer Center Groningen, University Medical Center Groningen, Groningen, The Netherlands; Department of Primary and Long-Term Care, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
⁵ Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands.
⁶ Amsterdam UMC, Location Vrije Universiteit Amsterdam, Department of Medicine for Older People, Amsterdam, The Netherlands; Amsterdam Public Health Research Institute, Aging & Later Life, Amsterdam, The Netherlands.
⁷ Research Institute for Medical Innovation, Radboud University Medical Center, Nijmegen, The Netherlands; Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands; University Knowledge Network for Older Adult Care Nijmegen (UKON), Radboud University Medical Center, Nijmegen, The Netherlands; Radboudumc Alzheimer Center, Radboud University Medical Center, Nijmegen, The Netherlands.

PMID: 40480283
DOI: 10.1016/j.jamda.2025.105713

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.

Keywords: Behavioral and psychological symptoms of dementia (BPSD); agitation; dementia; mortality; neuropsychiatric symptoms.

Publication types

Observational Study

MeSH terms

Aged
Aged, 80 and over
Cause of Death
Dementia* / mortality
Female
Humans
Male
Netherlands / epidemiology
Problem Behavior* / psychology