How People with Dementia Die

Dementia is a terminal illness. However, people with advanced dementias often languish in skilled nursing facilities, far from the ministrations of specialists. And, with reasonable luck, they have directives that specify that they are not to be taken to the hospital in the event of a respiratory arrest. Consequently, most of us are not privy to the mechanisms of demise in such situations.

In the interests of demystifying this, a group of geriatrics researchers sought to prospectively study the course and concomitants of advanced dementia. They followed 323 patients, in 22 nursing homes near Boston, for 18 months. Eligible patients were identified by a variety of measures commonly already obtained on such patients. The required levels of these measures for study enrollment specify, for example, paucity or absence of speech, incontinence, and inability to walk. These were severely impaired people. The medical records were reviewed for episodes of complications such as pneumonia, eating impairment, and fevers. Other data obtained were related to "sentinel events," evidence of distress and unpleasant interventions, and various issues regarding family members (and other "health care proxies").

The results are instructive. The mean age of the cohort was 85.3 years old, and the median interval since dementia diagnosis was 6.0 years. 177 (54.8%) of the patients died during the 18 month study period. The median survival was 478 days, and the probability of death within 6 months was 24.7%. Probabilities for medical problems during the study period were 41.1% for pneumonia, 52.6% for an episode of fever, and an impressive 85.8% for an eating problem.

Distressing symptoms were distressingly common, and the probability increased as the patient neared death. The most common such symptoms were agitation (53.6%), dyspnea (46.0%) and pain (39.1%). The nature of sentinel events is also interesting, particularly from a neurologic perspective. 42 such events occured, of which the most common was seizure (14/42; 33.3%), followed by gastrointestinal hemorrhage (11; 26.2%) and hip fracture (3; 7.1%). Stroke also occurred in 3 patients.

During the study period, 16.7% of all patients were hospitalized and 8.0% received tube feedings. The probability of such an intervention was higher as patients neared death: Within 3 months of death, 52 (29.4%) received parenteral therapies, but fewer (12.4%) were hospitalized. In the same pre-death interval, 72 patients (40.7%) received at least one such intervention. Interventions were most common in patients with pneumonia.

Communication with family members was quite poor. At the time of the last evaluation, only 18.0% reported receiving prognostic information from a physician. Also, while 81.4% thought they understood what complications to expect, less than one third (32.5%) indicated that a physician had counseled them about this.

So, this was a rigorously undertaken prospective study. The findings quantify the high mortality rate associated with advanced dementia, and bring some clarity to the associated pneumonias and eating impairments. The mortality rate of advanced dementia is comparable to that of metastatic breast cancer. Eating problems were common, and survival shortened after onset. And, despite a goal of comfort for such patients, distressing symptoms were quite common. Interventions of unclear value were common shortly prior to death.

While these are unpleasant matters to contemplate, they are of great importance. The population is aging and dementias are becoming more commonplace. We have an obligation to provide the best possible care for people at the end of life. We don't seem to be doing particularly well at this, however.