How do people with dementia die?

Originally published in

by Victor G. Dostrow, MD

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.

How do people with dementia die? 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.

Victor G. Dostrow is a neurologist who blogs at The Nerve Center.

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  • Ralph

    Families are often unprepared to deal with the end of life issues even when the patient has a severe dementia. I have intubated several patients just because the family could not decide if they wanted to withhold care.
    Physician – family communication in an outpatient settings is very important to deal with this issue.

  • weakanddizzy

    I deal with this every day as a hospitalist. Many families are clueless and I spend an enormous amount of time explaining that dementia is a terminal illness and there is little we can do to change the trajectory. I think it is reasonable to give antibiotics, a limited amount of IV fluid support, good general nursing care, speech evaluation and modification of diet when indicated. Some families can accept the inevitable and appreciate your efforts to help their loved ones, others are unreasonable and demand multiple subspecialist consultations ( eg. neurology, pulmonary, GI, you name it) with no real change in the plan or outcome but a whole lot more testing and interventions of dubious value. I for one am not likely to argue with families. If they demand a neurology consult for dementia or GI for a PEG tube ( even after I explain there has never been a study to show they prolong quantity or quality of life) I get the consult. After all dead patients never sue you, but their families can easily find a med mal lawyer willing to listen to their complaints about the care you provided ( or denied) to their loved ones.

  • Primary Care Internist

    I give reasonable prognostic information to ALL my patients’ families with advanced dementia in a large nursing home in NY, with varying degrees of information absorption. I would say that once such patients stop eating and walking, life expectance is very short (even with PEG placement). Still I would say that if someone asked families after patients die, at least half would say that they hadn’t been told what to expect.

    So I’d say the study is interesting, but probably misleading. The same is true of most ER docs I know (I don’t know any of them that “sugarcoat” the prognosis).

    None of this will change without tort reform. There’s just no downside to getting GI to do a PEG, getting a useless neuro consult, or sending the near-vegetative demented patient back & forth to the hospital with pneumonia. There is just only down-side to using good judgment in the unnecessary use of limited healthcare resources, and I am certain it is straining our hospital ERs.

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