The clinical course of advanced dementia

Abstract

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

Methods: We followed 323 nursing home residents with advanced dementia and their health care proxies for 18 months in 22 nursing homes. Data were collected to characterize the residents' survival, clinical complications, symptoms, and treatments and to determine the proxies' understanding of the residents' prognosis and the clinical complications expected in patients with advanced dementia.

Results: Over a period of 18 months, 54.8% of the residents died. The probability of pneumonia was 41.1%; a febrile episode, 52.6%; and an eating problem, 85.8%. After adjustment for age, sex, and disease duration, the 6-month mortality rate for residents who had pneumonia was 46.7%; a febrile episode, 44.5%; and an eating problem, 38.6%. Distressing symptoms, including dyspnea (46.0%) and pain (39.1%), were common. In the last 3 months of life, 40.7% of residents underwent at least one burdensome intervention (hospitalization, emergency room visit, parenteral therapy, or tube feeding). Residents whose proxies had an understanding of the poor prognosis and clinical complications expected in advanced dementia were much less likely to have burdensome interventions in the last 3 months of life than were residents whose proxies did not have this understanding (adjusted odds ratio, 0.12; 95% confidence interval, 0.04 to 0.37).

Conclusions: Pneumonia, febrile episodes, and eating problems are frequent complications in patients with advanced dementia, and these complications are associated with high 6-month mortality rates. Distressing symptoms and burdensome interventions are also common among such patients. Patients with health care proxies who have an understanding of the prognosis and clinical course are likely to receive less aggressive care near the end of life.

Figure 1. Overall Mortality and the Cumulative Incidences of Pneumonia, Febrile Episodes, and Eating Problems among Nursing Home Residents with Advanced Dementia

Overall mortality for the nursing home residents during the 18-month course of the study is shown. The residents’ median age was 86 years, and the median duration of dementia was 6 years; 85.4% of residents were women.

Figure 2. Survival after the First Episode of Pneumonia, the First Febrile Episode, and the Development of an Eating Problem

Panel A shows the results of the survival analysis for pneumonia, Panel B the results for a febrile episode, and Panel C the results for an eating problem. The red line in each panel shows survival after development of these complications. The blue line in each panel shows the estimated survival before the complication developed or in its absence (for residents in whom the complication never developed). All curves are presented for the median age (86 years), median duration of dementia (6 years), and distribution according to sex (85.4% women).

Figure 3. Proportion of Nursing Home Residents Who Had Distressing Symptoms at Various Intervals before Death