title: Behavioral variant frontotemporal dementia: advanced disease stages and death. A step to palliative care.
abstract: The aim of the present study was to gain insight into the living and care situation in advanced behavioral variant frontotemporal dementia (bvFTD), to describe symptoms and findings in advanced bvFTD, and to evaluate somatic comorbidities and circumstances of death.
  
  
  
  Standardized interviews were conducted with family caregivers of 83 patients with bvFTD. Forty-four percent of the patients were already deceased at the time of the interview.
  
  
  
  At the time of the interview or death, respectively, 47% of the patients lived in a nursing home. The median time between symptom onset and nursing home admission was 5.0 ± 5.5 years. In moderate and severe dementia stages almost all patients suffered from severe disabilities including impairment of language, gait, swallowing, and of the ability to care for themselves. Sixteen percent of the patients had got enteral tube feeding. Comorbid somatic diseases were diagnosed in 46% of the patients. Twenty-three percent of the deceased patients had been admitted into a hospital before death. Cardiovascular disease and respiratory disease, mostly pneumonia, were the most frequent causes of death.
  
  
  
  Advanced bvFTD is characterized by severe cognitive impairment and physical disabilities. BvFTD leads to a premature death. Our findings stress the importance of strategies that maximize patient comfort in advanced disease stages and allow for a peaceful death. Copyright © 2016 John Wiley & Sons, Ltd.
authors.affiliation: Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar of Technical University of Munich, Munich, Germany.
authors.forename: J
authors.initials: J
authors.lastname: Diehl-Schmid
authors.affiliation: McGill University, Department of Psychiatry, and Douglas Mental Health University Institute, McGill Group for Suicide Studies, Montréal, Canada.|Hôpital de Saint-Jérôme, CISSS des Laurentides, Saint-Jérôme, Canada, and Laboratoire de Psychologie des Pays de la Loire, Université d'Angers, Angers, France.
authors.forename: S
authors.initials: S
authors.lastname: Richard-Devantoy
authors.affiliation: Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar of Technical University of Munich, Munich, Germany.
authors.forename: T
authors.initials: T
authors.lastname: Grimmer
authors.affiliation: Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar of Technical University of Munich, Munich, Germany.
authors.forename: H
authors.initials: H
authors.lastname: Förstl
authors.affiliation: Institute of Ethics, History, and Theory of Medicine, Ludwig Maximilians Universität München, Munich, Germany.
authors.forename: R
authors.initials: R
authors.lastname: Jox
mesh_terms: D000368:Aged; D002423:Cause of Death; D015897:Comorbidity; D005260:Female; D057180:Frontotemporal Dementia / Q000401:mortality / Q000503:physiopathology / Q000523:psychology; D006760:Hospitalization / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D001523:Mental Disorders / Q000209:etiology; D008875:Middle Aged; D009483:Neuropsychological Tests; D009735:Nursing Homes / Q000706:statistics & numerical data*; D010166:Palliative Care / Q000706:statistics & numerical data*; D013001:Somatoform Disorders
keywords: advanced disease stage; bvFTD; death; frontotemporal dementia; palliative care; young onset dementia