Nursing home residents dying with dementia in Flanders, Belgium: a nationwide post-mortem study on clinical characteristics and quality of dying.

Background
There is a lack of large-scale, nationwide data describing clinical characteristics and quality of dying of nursing home residents dying with dementia.

Methods
In Flanders, Belgium, we conducted a post-mortem study (2010) using random cluster-sampling. In selected nursing homes, all deceased residents with dementia in a period of three months were reported. For each case the nurse most involved in care, the family physician and nursing home administrator reported health status, clinical complications in the last phase of life and quality of dying. We used Cognitive Performance Scale and Global Deterioration Scale to assess dementia.

Results
We identified 198 deceased residents with dementia in 69 nursing homes. Age distribution was the same as all deceased nursing home residents with dementia in Flanders, 2010. Fifty four percent had advanced dementia. In the last month of life, 95.5% had one 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.

Conclusions
Regardless of the dementia stage, many nursing home residents develop serious clinical complications symptoms in the last phase of life, posing major challenges to the provision of optimum end-of-life care.