January 12, 2009
Alzheimer's disease may be under-reported as a cause of death and often is not cited on death certificates, new research suggests. The findings point to a lack of understanding of the natural course of Alzheimer's, which can be a fatal illness, and suggest that more people may die of the disease than is generally believed.
Researchers at Hebrew SeniorLife's Institute for Aging Research, an affiliate of Harvard Medical School, studied 323 residents at 22 Boston-area nursing homes who were suffering from severe Alzheimer's and other forms of dementia. All were part of the CASCADE, or Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life, study from 2003 to 2007.
Of the 323 participants, 165 died during follow up. "Despite the terminal stage of dementia in our cohort," said lead author Dr. Susan L. Mitchell, "dementia was not recorded on 37 percent of death certificates."
Among 114 men and women who were specifically diagnosed with severe Alzheimer's prior to their deaths, the disease was mentioned on only 27 percent of the death certificates.
According to the National Center for Health Statistics, Alzheimer's disease, the most common form of dementia, is the fifth leading cause of death among Americans over 65. But these data are derived from death certificates and, based on the current findings, the numbers may be too low.
"An appreciation that patients die from and with dementia is necessary to inform end-of-life decision making," wrote study author Dr. Melissa Wachterman of Brigham and Women's Hospital. "Underestimation of the burden of dementia as a major fatal illness may hamper planning of health services needed for persons dying with this condition."
Previous studies have also suggested that Alzheimer's remains under-reported as a cause of death. The current findings suggest that Alzheimer's may be under-recognized as a terminal illness among medical professionals and the public. They appeared in a letter in The Journal of the American Medical Association.
Melissa Wachterman, Dan K. Kiely, Susan L. Mitchell: "Reporting Dementia on the Death Certificates of Nursing Home Residents Dying With end-Stage Dementia." The Journal of the American Medical Association, Dec. 10, 2008; vol 300: pp 2608-2610