Abstract
We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia. Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, the Netherlands, Poland, and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly discriminatory staff-reported instruments. The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia, and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24 to 27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = .03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia, and 48% in residents without dementia (P < .001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = .04; other stages of dementia, P = .04; without dementia, P < .001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < .001) and without dementia (P = .003), while the presence and severity of dementia moderated this association (P = .03). Developing "other clinical events" was not associated with comfort. Discomfort was observed in dying residents who developed major clinical events, especially pneumonia, which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia.
Highlights
As populations continue to age, the number of people with dementia in Europe is projected to almost double to about 18.8 million by 2050.1 Dementia is incurable and characterized by a trajectory of severe disabilities persisting for months or years until death.[2,3] Because of the prolonged need for high levels of complex care,[2] half or more of people with dementia in many resource-rich countries eventually live and die in nursing homes (NH).[4]
Febrile episodes occurred at different rates in residents with advanced dementia (39%), other stages of dementia (34%) and without dementia (28%; P=0.03)
Overall, developing clinical events such as pneumonia, febrile episodes and intake problems was associated with discomfort in dying NH residents
Summary
As populations continue to age, the number of people with dementia in Europe is projected to almost double to about 18.8 million by 2050.1 Dementia is incurable and characterized by a trajectory of severe disabilities persisting for months or years until death.[2,3] Because of the prolonged need for high levels of complex care,[2] half or more of people with dementia in many resource-rich countries eventually live and die in nursing homes (NH).[4] Recent estimates indicate that between 58% and 83% of NH residents have dementia, about half may be at an advanced stage.[5] While comfort may be an appropriate goal of care, residents with advanced dementia remain at risk of dying with great discomfort, potentially linked to suboptimal symptom management, overly burdensome treatments and unnecessary hospitalizations, and dying in hospitals.[2,6,7,8,9,10]. Comfort while dying may differ between these groups, because the inability to verbalize a complaint due to cognitive decline risks inappropriate treatment.[13]
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