• An Vandervoort, Lieve Van den Block, Jenny T van der Steen, Ladislav Volicer, Robert Vander Stichele, Dirk Houttekier, and Luc Deliens.
• End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium. An.Vandervoort@vub.ac.be
• J Am Med Dir Assoc. 2013 Jul 1;14(7):485-92.

ObjectivesThere is a lack of large-scale, nationwide data describing clinical characteristics and quality of dying of nursing home residents dying with dementia. We set out to investigate quality of end-of-life care and quality of dying of nursing home residents with dementia in Flanders, Belgium.Design/Setting/ParticipantsTo obtain representativity, we conducted a postmortem study (2010) using random cluster sampling. In selected nursing homes, all deceased residents with dementia in a period of 3 months were reported. For each case, a structured questionnaire was filled in by the nurse most involved in care, the family physician, and the nursing home administrator. We used the Cognitive Performance Scale and Global Deterioration Scale to assess dementia. Main outcome measures were health status, clinical complications, symptoms at the end of life, and quality of dying.MeasurementsHealth status, clinical complications, symptoms at the end of life, and quality of dying.ResultsWe identified 198 deceased residents with dementia in 69 nursing homes (58% response rate). Age distribution was the same as all deceased residents with dementia in Flanders, 2010. Fifty-four percent had advanced dementia. In the last month of life, 95.5% had 1 or more sentinel events (eg, eating/drinking problems, febrile episodes, or pneumonia); most frequently reported symptoms were pain, fear, anxiety, agitation, and resistance to care. In the last week, difficulty swallowing and pain were reported most frequently. Pressure sores were present in 26.9%, incontinence in 89.2%, and cachexia in 45.8%. Physical restraints were used in 21.4% of cases, and 10.0% died outside the home. Comparing stages of dementia revealed few differences between groups regarding clinical complications, symptoms, or quality of dying.ConclusionRegardless of the dementia stage, many nursing home residents develop serious clinical complications and symptoms in the last phase of life, posing major challenges to the provision of optimum end-of-life care.Copyright © 2013 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.

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