December 7, 2009
Alzheimer's remains a leading cause of death, yet many consider it a disease of mind and memory. Now, a new study in the New England Journal of Medicine calls attention to the physical tolls on the body of Alzheimer's and other forms of dementia.
Alzheimer's is a disease that attacks both brain and body, and those in the advanced stages of Alzheimer's face problems similar to those in the terminal stages of physical illnesses like cancer. While Alzheimer's may linger for years in its early stages, with memory loss and thinking problems predominating, recognition of the late-stage physical problems linked to Alzheimer's could lead to better care for those in the advanced stages of the disease, the authors note.
Looking at 323 residents of nursing homes with advanced Alzheimer's and other forms of dementia over 18 months, researchers from Harvard cataloged the kinds of medical problems they experienced and the clinical care they received. Those in the study could not recognize family members. Many could barely speak or walk or make their wishes known, were incontinent, and were totally dependent on others for their care.
During that time, more than half of the study participants died. They had a one in four chance of dying within six months, and a median survival of 1.3 years, similar to that for terminal lung cancer. Most of those who died did not die from a specific medical event, like a heart attack, stroke or hip fracture; rather, their bodies seemed to shut down, making them susceptible to infections and a wide range of problems.
In addition, many suffered from troubling conditions like pneumonia, fevers and problems eating. Pain, shortness of breath, bedsores and other distressing symptoms were also common among those in the late stages of Alzheimer's.
In the last three months of life, about 40 percent of those who had a medical complication underwent aggressive therapies. Many were put into hospitals or emergency rooms, given artificial nutrition through tubes or put on ventilators. Such procedures can be especially distressing for someone with Alzheimer's, contributing to confusion, anxiety and suffering, and often do nothing to improve the quality of life.
Many of those in the final stages of Alzheimer's also received extraneous treatments. Some were exposed to medical procedures like colonoscopies to test for bowel problems, or continued on medications for high cholesterol or bone thinning that may be hard to administer or have troublesome side effects.
The researchers found that when family members and other caretakers were well informed about the physical toll of advanced Alzheimer's, they were much less likely to condone aggressive measures for their loved ones near the end of life. Such patients may also be less likely to receive palliative measures like pain medications that can relieve suffering than those with another ailment like heart failure or cancer.
A growing number of Americans are dying from Alzheimer's. The disease is responsible for more than 70,000 deaths a year, and Alzheimer's is the seventh leading cause of death overall in the United States, according to the Centers for Disease Control and Prevention. Those numbers of expected to grow in the coming decades as the population ages, unless a cure is found.
Recognition of Alzheimer's late physical problems is critical for making sound judgments about care and medical treatment in the last months of life. Family members who understand that Alzheimer's is a progressive, debilitating and terminal illness may be far less likely to subject loved ones to distressing treatments. Patients are also more likely to receive much-needed pain relief and comfort care.
Part of the problem is that those with advanced dementia often cannot report symptoms or make their wishes know. As a result, family caregivers may feel confused and guilt-stricken about what a loved one might want. Living wills and advanced directives, made out long before Alzheimer's takes its toll, can help to alleviate the confusion.
In a perspective piece accompanying the study, Dr. Greg A. Sachs of Indiana University School of Medicine recounted how as a teenager he watched his grandmother's decline from Alzheimer's disease. She was given repeated doses of antibiotics for infections and sedated and put in restraints for agitation during her final months, but, as he writes, "Seeing my grandmother in that state was so distressing that my mother eventually stopping taking the grandchildren to visit. My grandmother had little in the way of either comfort or company toward the end."
Palliative and hospice care, Dr. Sachs says, could greatly improve the care of patients with advanced Alzheimer's.
Susan L. Mitchell, M.D., M.P.H.; Joan M. Teno, M.D.; Dan K. Kiely, M.P.H.; et al: "The Clinical Course of Advanced Dementia." New England Journal of Medicine, Oct. 15, 2009, Vol. 361. No. 16, pages 1529-1538.
Greg A. Sachs, M.D.: "Dying from Dementia." The New England Journal of Medicine, Oct. 15, 2009, Vol. 361, No. 16, pages 1595-1596.