According to scientists, the clinical course of advanced dementia, including uncomfortable symptoms such as pain and high mortality, is similar to that experienced by patients of other terminal conditions.

"Dementia is a terminal illness," says study author Susan L. Mitchell. "As the end of life approaches, the pattern in which patients with advanced dementia experience distressing symptoms is similar to patients dying of more commonly recognized terminal conditions, such as cancer."

There are currently more than 5 million Americans who suffer from dementia, a number that is expected to triple in the next 40 years. A recent study by Alzheimer's Disease International estimates that the number of people with dementia worldwide will exceed 35 million by 2050. Dementia is a group of symptoms severe enough to interfere with daily functioning, including memory loss, difficulty communicating, personality change, and an inability to reason. Alzheimer's disease is the most common form of dementia.

This study is the first to rigorously describe the clinical course of advanced dementia, and underscores the need to improve the quality of palliative care in nursing homes to reduce the physical suffering of patients with advanced dementia, and to improve communication with their family members. Previous studies suggest that patients with advanced dementia are under-recognized as being at high risk of death and receive suboptimal palliative care.

The study prospectively followed the clinical course of 323 nursing home residents with advanced dementia living in 22 Boston-area nursing homes for up to 18 months. At the final stage of the disease, patients had profound memory deficits such that they could not recognize close family members, spoke fewer than six words, and were non-ambulatory and incontinent.

Over the course of the study, 177 patients died. The researchers found that the most common complications were pneumonia, fevers and eating problems, and that these complications were associated with high six-month mortality rates. Uncomfortable symptoms, including pain, pressure ulcers, shortness of breath, and aspiration, were also common and increased as the end of life approached.


The researchers found that while 96 percent of the patients' health-care proxies believed that comfort care was the primary goal of care for their loved one, nearly 41 percent of patients who died during the study underwent at least one intervention, including hospitalization, an emergency room visit, intravenous therapy, or tube feeding, in the last three months of life. However, patients whose health-care proxies understood the clinical course of the disease were less likely to receive aggressive treatment near the end of life.

"Many of the patients in our study underwent interventions of questionable benefit in the last three months of life," says Dr. Mitchell. "However, when their health-care proxies were aware of the poor prognosis and expected clinical complications in advanced dementia, patients were less likely to undergo these interventions and more likely to receive palliative care in their final days of life."

At the beginning of the study, 81 percent of the proxies felt they understood which clinical complications to expect in advanced dementia, yet only one third said that a physician had counseled them about these complications.

"A better understanding of the clinical trajectory of end-stage dementia is a critical step toward improving the care of patients with this condition," says Dr. Mitchell. "This knowledge will help to give health-care providers, patients and families more realistic expectations about what they will confront as the disease progresses and the end of life approaches."
References:
1. Susan L. Mitchell, et al. The Clinical Course of Advanced Dementia. New England Journal of Medicine. Volume 361:1529-1538. October 15, 2009. Number 16.