Most Alzheimer’s Patients Are Never Informed Of Their Diagnosis, Report Says

A shocking majority of Alzheimer’s disease patients or their caregivers are never told of their AD diagnosis by their doctors, according to research from the Alzheimer’s Association. The statistics have been called “disturbing,” especially given that the early stages of Alzheimer’s disease is a crucial window of time when patients and their loved ones could be planning for their future medical care and getting their affairs in order. Only 45 percent of patients on Medicare who have been diagnosed with Alzheimer’s disease are told the diagnosis by their doctor.

The statistics were published in the 2015 Alzheimer’s Disease Facts and Figures report. Over five million Americans have Alzheimer’s disease, a progressive disease that is the number one cause of dementia. Moreover, according to the Alzheimer’s Association, the disease is not a normal part of aging. Some people show symptoms of it as early as their 40s. Alzheimer’s disease is the sixth leading cause of death in America, according to Medical News Today, yet many people and their loved ones have never been told they are suffering from this neurodegenerative disorder.

“These disturbingly low disclosure rates in Alzheimer’s disease are reminiscent of rates seen for cancer in the 1950s and 60s, when even mention of the word cancer was taboo,” Beth Kallmyer, vice president of Constituent Services for the Alzheimer’s Association stated. “It is of utmost importance to respect people’s autonomy, empower them to make their own decisions and acknowledge that people with Alzheimer’s have every right to expect truthful discussions with their physicians.”

Imagine getting regular check-ups, assuming you are in the clear, but in actuality, you have Alzheimer’s disease and your doctor knows it. According to the disturbing report featured on NPR which examines the Alzheimer’s Association’s report in detail, many physicians stated that part of the reason for keeping the diagnosis from their patients is that they find it hard to tell people that they have a deadly disease that can’t be stopped or slowed, or stated that they were concerned over the emotional reaction being told their diagnosis might instigate. Still, that belief that Alzheimer’s disease can’t be stopped or slowed might not even be true. Last year, researchers from UCLA’s Mary S. Easton Center for Alzheimer’s Disease Research and the Buck Institute for Research on Aging teamed up and were able to document using lifestyle changes to actually reverse memory loss caused by Alzheimer’s disease. Patients unaware that they are in the early stages of the disease wouldn’t be given the opportunity to explore such lifestyle changes.

Dr. Alois Alzheimer described the disease in 1906 after the death of a middle-aged patient he had treated, who had suffered from what he described as a “peculiar disease.” When the doctor first examined Auguste Deter in 1901, she was developing paranoia, psychological change, and memory loss. He would ask her questions, and she would sometimes respond by repeating, “Ich hab mich verloren.” Translated into English, she was saying, “I have lost myself.” After her death in 1906, the autopsy of Auguste’s brain showed shrinkage with the brain and “abnormal deposits in and around nerve cells,” according to the Alzheimer’s Association. A century later, a genetic test found that Dr. Alzheimer’s patient indeed had been suffering from the degenerative disease. These days, someone in the United States is diagnosed with Alzheimer’s disease every 67 seconds, and according to KTTC News, “by mid-century that will advance to every 33 seconds.”

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