title: Dying with dementia: symptom burden, quality of care, and place of death.
abstract: BACKGROUND
  No detailed information has been available until now about the care setting, circumstances and place of death, symptom burden, and quality of care of persons with end-stage dementia in Germany.
  
  
  METHODS
  This cross-sectional study is based on a random sample of 5000 persons who died in the period from 25 May to 24 August 2008 in the German federal state of Rhineland-Palatinate. Their surviving relatives were contacted and asked to participate in a questionnaire survey. Data were obtained in this way for 310 persons with dementia and 931 persons without dementia.
  
  
  RESULTS
  42.4% of the persons with dementia died at home. Most patients and their relatives preferred death at home to death anywhere else (94.8% of patients, 77.5% of relatives). Persons living with at least one relative were more likely to die at home (adjusted odds ratio [aOR] 4.69, 95% confidence interval [CI] 2.71-8.11). According to information supplied by the relatives, the overwhelming majority of patients suffered, two days before death, from moderate to severe weakness (94.9%), fatigue (94.4%), disorientation/confusion (86.9%), and appetite loss (86.4%). Other common symptoms were anxiety (61.0%), tension (59.9%), dyspnea (56.7%), and pain (52.5%). The relatives were critical of the quality of care on standard hospital wards, citing the limited temporal availability of staff and limited emotional support.
  
  
  CONCLUSIONS
  These data indicate the high symptom burden of persons with dementia in Germany at the end of their lives. They underscore the need for proper palliative care in all of the settings where persons with dementia die. Specialized in- and outpatient palliative care should not be offered only to patients with cancer, but should rather be made available to all who need it.
authors.affiliation: Institute of Occupational, Social and Environmental Medicine, University Medical Center of the Johannes Gutenberg University of Mainz. escobar@uni-mainz.de
authors.forename: Luis Carlos Escobar
authors.initials: LC
authors.lastname: Pinzon
authors.forename: Matthias
authors.initials: M
authors.lastname: Claus
authors.forename: Klaus Maria
authors.initials: KM
authors.lastname: Perrar
authors.forename: Kirsten Isabel
authors.initials: KI
authors.lastname: Zepf
authors.forename: Stephan
authors.initials: S
authors.lastname: Letzel
authors.forename: Martin
authors.initials: M
authors.lastname: Weber
mesh_terms: D017677:Age Distribution; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D015897:Comorbidity; D003704:Dementia / Q000401:mortality* / Q000451:nursing*; D004417:Dyspnea / Q000401:mortality* / Q000451:nursing; D005221:Fatigue / Q000401:mortality* / Q000451:nursing; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D008297:Male; D010146:Pain / Q000401:mortality* / Q000451:nursing; D010166:Palliative Care / Q000706:statistics & numerical data; D015995:Prevalence; D011787:Quality of Health Care / Q000706:statistics & numerical data*; D012307:Risk Factors; D017678:Sex Distribution; D013315:Stress, Psychological; D015996:Survival Rate; D013727:Terminal Care / Q000706:statistics & numerical data*