Advanced Dementia Redefined as a Terminal Illness

Although early-stage dementia emerges as a memory disorder that commonly affects the aging mind, the end-stage effects are extensive and the illness is terminal. Based on new research, experts have redefined advanced dementia as fatal failure of the brain.

The study revealed that patients who reach the end stages of dementia need comfort and care, but not aggressive intervention that that offers no hope of improving patient outcomes. Lead study author Dr. Susan L. Mitchell from the Hebrew Senior Life Institute for Aging Research in Boston, said that dementia currently affects approximately 5 million Americans, and the number is expected to triple by 2050. Mitchell also pointed out, “Dementia is a leading cause of death in the U.S., and yet surprisingly little is known about how these patients die.”

To learn more about what happens during the advanced stages of dementia, the researchers conducted an analysis of 323 advanced dementia patients in 22 nursing homes. According to Mitchell, the patients included in the study were unable to recognize family members, and were unable to speak six words. In addition, they were incontinent and totally dependent on other people for their most basic care.

The researchers tracked the progression of the disease, as well as complications and survival rates. In addition, they recorded the treatments received by the patients, their prognoses, and the understanding of advanced dementia among their caretakers.

The team found that many family members of patients with end-stage dementia don’t view the condition as terminal. Therefore, aggressive interventions such as feeding tubes are often ordered when there is actually no hope of improvement, and sadly, patients suffer the consequences. Mitchell explained, “When families are more prepared, their loved ones get less burdensome interventions.” She said that only 27 percent of study patient’s families understood that end-stage dementia was terminal, and were aware of the possible occurrence of complications such as fever, pneumonia or an eating problem.

A total of 55 percent of the patients died during the 18-month study period. Of those, almost half occurred within the first six months of the analysis. The median survival period was 478 days, which is similar to that of terminal-cancer patients. A total of 31 patients suffered major health events, including seizure, gastrointestinal bleeding, heart attack and stroke. However, only in rare cases did the events end in death. The most common complications related to death were pneumonia, fever, and eating problems. Nearly half (46 percent) of patients experience shortness of breath, while 39 percent experienced pain. In addition, over 40 percent underwent at least one serious medical intervention including a visit to the emergency room, hospitalization, or tube feeding.

According to Mitchell there is much room for improvement in the communication between families and care providers. In addition, she believes that nursing home residents who suffer from dementia should be able to receive high-quality palliative care and hospice care as readily as those people who have other terminal illnesses. Regarding the study results, she concluded, “Our main findings confirmed dementia has high mortality. People in the study didn't have other devastating things happen to them before they died.”