This prospective cohort study of nursing home residents shows that patients with advanced dementia have a high mortality rate, that infections and eating problems are likely to develop in the terminal stage of dementia, and that distressing symptoms are common and increase as death approaches. Within 3 months before death, many of the residents in our study underwent burdensome interventions of questionable benefit. However, when health care proxies were aware of the poor prognosis and the expected clinical complications, residents were less likely to undergo these interventions in the final days of life.
Our study corroborates and extends prior research showing high mortality rates among patients with advanced dementia.10,11,20-22
With a 6-month mortality rate of 25% and a median survival of 1.3 years, advanced dementia is associated with a life expectancy similar to that for more commonly recognized end-of-life conditions, such as metastatic breast cancer23
and stage IV congestive heart failure.24
The idea that dementia is a terminal illness is further supported by our finding that most of the deaths were not precipitated by devastating acute events (e.g., myocardial infarction), other terminal diseases (e.g., cancer), or the decompensation of chronic conditions (e.g., congestive heart failure).
Although it is widely held that infections and eating difficulties are hallmarks of advanced dementia,25
there are few prospective data on the incidence of these complications. Over the course of 18 months, more than half of the residents in our study had infectious episodes, and 86% had eating problems. Survival was poor after the onset of these complications.7,11,12,26
These findings can be used to inform families and care providers that infections and eating problems should be expected and that their occurrence often indicates that the end of life is near. Families and providers should also understand that although these complications may be harbingers or even precipitants of death, as they are in other terminal diseases (e.g., the acquired immunodeficiency syndrome, cancer, and emphysema), it is the major illness, in this case dementia, that is the underlying cause of death.
Although the health care proxies for the nursing home residents in our study overwhelmingly felt that the primary goal of care was comfort, physical suffering was common among the residents. Our study extends prior work describing discomfort in advanced dementia,3-5,8,12,27-29
showing that as the end of life approaches, there is an increase in distressing symptoms, the frequency and pattern of which are similar to those in patients with terminal cancer.30
Moreover, patients with dementia who are dying often receive aggressive treatments, such as tube feeding or hospitalization for pneumonia, that may be of limited benefit and that are inconsistent with a palliative approach to care.3,10,11,31-33
Although some potentially burdensome interventions may be necessary to reduce physical suffering (e.g., hospitalization for fracture), such circumstances were infrequent in this study.
Patients who believe the end of life is near34
and who have a realistic understanding of the clinical problems characterizing terminal disease35
are more likely to receive care directed toward comfort. Our findings show that these observations extend to health care proxies for nursing home residents with advanced dementia. In a recent study, patients with cancer who had end-of-life discussions with their physicians were less likely to receive aggressive care in the final week of life than were patients who did not have such discussions with their physicians.36
However, we found that the mere fact that health care proxies received counseling was not correlated with a reduced rate of burdensome interventions. Rather, our findings suggest that it is the perceptions of the health care proxies, which may be a consequence of the quality of counseling, that are associated with the aggressiveness of end-of-life care.
Several limitations of this study deserve comment. First, because all 22 of the facilities in the CASCADE study are located in the Boston area, the extent to which our findings can be generalized to other geographic areas is uncertain. However, the characteristics of the nursing homes and residents in our sample are similar to those found nationwide.13
Second, data obtained from chart reviews and nurses’ reports may be inaccurate. For example, prior work suggests that pain is underdocumented by nurses, particularly in patients with dementia.8
Third, we can report only the associations between the health care proxies’ perceptions of prognosis and of the complications expected and the use or nonuse of aggressive interventions — we cannot draw conclusions about cause and effect. Finally, even though all nursing home residents were put through a rigorous process of examination to determine whether they met the criteria for advanced dementia, it was not feasible to determine the time at which they first met these criteria. Therefore, our sample does not represent an inception cohort, and survival times do not reflect survival from the onset of advanced dementia.
As the mortality rates for many leading causes of death have declined over the past decade, deaths from dementia have steadily increased.1
Patients, families, and health care providers must understand and be prepared to confront the end stage of this disease, which is estimated to afflict more than 5 million Americans currently and is expected to afflict more than 13 million by 2050.37
Our prospective study shows that dementia is a terminal illness and furthers our knowledge of the clinical complications characterizing its final stage. We have shown that an understanding of the prognosis and expected complications on the part of health care proxies reduces the likelihood that nursing home residents with advanced dementia who are nearing the end of life will undergo potentially burdensome interventions of unclear benefit. In addition, this study underscores the need to improve the quality of palliative care in nursing homes in order to reduce the physical suffering of residents with advanced dementia who are dying.