What complications did nursing home residents with advanced dementia experience?

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Dementia is a leading cause of death in the United States, but it is underrecognized as a terminal illness. The clinical course of nursing home residents with advanced dementia had not been well described.

Researchers followed 323 nursing home residents with advanced dementia and their health care proxies for 18 months in 22 nursing homes. They collected data on residents’ survival, clinical complications, symptoms and treatments, and assessed proxies’ understanding of the prognosis and complications expected in advanced dementia.

Over 18 months, 54.8% of residents died. The probability of pneumonia was 41.1%, of a febrile episode 52.6%, and of an eating problem 85.8%. After adjustment for age, sex and disease duration, the 6-month mortality rate was 46.7% among residents who had pneumonia, 44.5% among those who had a febrile episode and 38.6% among those who had an eating problem. Distressing symptoms were common, including dyspnea (46.0%) and pain (39.1%).

In the last 3 months of life, 40.7% of residents underwent at least one burdensome intervention: hospitalization, an emergency room visit, parenteral therapy or tube feeding. Residents whose proxies understood the poor prognosis and expected complications of advanced dementia were much less likely to undergo burdensome interventions in those last 3 months than residents whose proxies did not have this understanding (adjusted odds ratio 0.12; 95% confidence interval 0.04 to 0.37).

The researchers concluded that pneumonia, febrile episodes and eating problems are frequent complications associated with high 6-month mortality in advanced dementia. Distressing symptoms and burdensome interventions are also common. Patients whose health care proxies understand the prognosis and clinical course are likely to receive less aggressive care near the end of life.