A new study from scientists at the Institute for Aging Research of Hebrew SeniorLife, an affiliate of Harvard Medical School, published in the New England Journal of Medicine, is the first to rigorously describe the course of advanced dementia, a leading cause of death in the United States. "Dementia is a terminal illness," says lead author Susan L. Mitchell, MD, MPH, Associate Professor of Medicine at Harvard Medical School. "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." The study 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. The "Choices, Attitudes and Strategies for Care of Advanced Dementia at the End-of-Life," or CASCADE, study followed 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, 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 most common complications were pneumonia, fevers and eating problems and were associated with high six-month mortality rates. Pain, pressure ulcers, shortness of breath, and aspiration were also common and increased as the end of life neared. At the beginning of the study, only one third of loved ones said that a physician had counseled them about these complications. Dr. Mitchell and her team 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 of questionable benefit, including hospitalization, an emergency room visit, intravenous therapy or tube feeding in the last three months of life. "However,” says Dr. Mitchell, “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. A better understanding of the clinical trajectory of end-stage dementia is a critical step toward improving the care of patients with this condition. This knowledge will help to give healthcare providers, patients and families more realistic expectations about what they will confront as the disease progresses and the end of life approaches."
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