More than 50 million people around the world have a terminal diagnosis of Alzheimer’s disease. Alzheimer’s and related neurological disease is rapidly becoming the leading cause of death around the globe. Thanks to a new report from the Alzheimer’s Association, those numbers grew exploded overnight.
The Alzheimer’s Association’s new report raises many scathing questions over ethics, treatment, malpractice, denial of care and mismanagement. The report found that just 45 percent of Medicare patients diagnosed with Alzheimer’s disease were informed of the diagnosis by their physician. By contrast, more than 90 percent of Medicare patients with cancer said they were informed by their doctor.
“What we found is really shocking,” says Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association. “This is reminiscent of what happened in the 1960s and 1970s with cancer. But that’s changed now, and it really needs to change for Alzheimer’s disease as well.”
For years, the association received complaints from family members who say that doctors are reluctant to reveal an Alzheimer’s diagnosis, Kallmyer says. So the association decided to investigate by studying medical records and survey results from Medicare recipients.
To make sure that Alzheimer’s patients hadn’t simply forgotten, the group also looked at Medicare survey responses from family members and other caregivers. The result wasn’t much better: Just 53 percent said a doctor told them of the patient’s diagnosis.
The report also found that patients with advanced Alzheimer’s disease were more likely to receive the diagnosis than people in the early stages of the disease. Doctors often blame the time constraints of short appointments. Or, it could be part of a culture of cost containment, risk management and denial in care.
“It’s difficult to disclose a diagnosis of a fatal brain disease in just a few minutes,” said Keith Fargo, director of scientific programs at the Alzheimer’s Association. “It’s also hard for doctors to tell patients they have a fatal disease that can’t be cured. And doctors often fear the emotional reaction an Alzheimer’s diagnosis can cause. By the time people are diagnosed with Alzheimer’s disease they are already losing cognitive functions. That’s distressing. Not knowing why is confusing and frightening.”
Let’s refresh our memories on some critical facts about Alzheimer’s disease diagnoses. It’s far from precise. In fact, it’s impossible to diagnose Alzheimer’s disease without an autopsy (which doesn’t happen). After the process of elimination, doctors can only guess at which neurological disease to diagnose.
This is where it gets complicated. Unfortunately, Alzheimer’s disease is a member of an aggressive family of neurodegenerative diseases known as Transmissible Spongiform Encephalopathy (TSE). Again, the operative word is “transmissible.” Related diseases are killing wildlife and livestock. Unfortunately, the TSE epidemic represents an environmental nightmare. The outbreak threatens every mammal on Earth.
TSEs include Alzheimer’s disease, Creutzfeldt-Jakob disease, Huntington’s disease, and Parkinson’s disease. TSEs also include mad cow disease and chronic wasting disease in deer. Few, if any, mammals are immune. There is no cure and there is no species barrier.
TSEs are caused by a deadly proteins called prions (PREE-on). Prion disease is unstoppable and the pathogen spreads through bodily fluids and cell tissue. Prions linger in the environment, homes, hospitals, nursing homes, dental offices, restaurants and many other places infinitely. They migrate, mutate, multiply and kill with unparalleled efficiency. Prions defy all attempts at sterilization and inactivation. Victims of the disease can spread the disease even further via bodily fluids and cell tissue. Victims often are contagious long before they appear sick.
What does all of this background have to do with an Alzheimer’s disease diagnosis? Doctors can’t tell the difference between any of the human forms of prion disease. They basically read the wind, flip a coin and diagnose the patient’s symptoms as Alzheimer’s disease, Creutzfeldt-Jakob disease (CJD) or Parkinson’s disease. It would better serve the public to stop the name game and use the most common term–prion disease. All patients should trigger the same protocol in care and safeguards to the public.
“The (human) brain diseases caused by prions includes Alzheimer’s, Parkinson’s, Huntington’s, amyotrophic lateral sclerosis (Lou Gehrig’s disease), and other disorders known as frontotemporal dementias,” said Nobel Laureate Stanley Prusiner, who earned a Nobel Prize in Physiology in 1997 for discovering deadly prions.
Unfortunately, the protocol for patient care is vastly different for CJD and related prion diseases. That’s a mistake. CJD is handled with the respect that a prion disease demands. Alzheimer’s disease is not. Hospitals, doctors and even coroners handle CJD with a wide berth, if at all. Unfortunately, they fail to warn family members. Meanwhile, no one is talking about the transmissible aspect of Alzheimer’s disease. That’s another mistake.
With this background in mind, let’s get back to the issue of doctors withholding information about patients. What does this pattern of activity suggest:
As you can see, the new report from the Alzheimer’s Association sparks more questions than it answers. We seek allies in pursuit of truth and reforms. Please join us.
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Gary Chandler is a prion expert. He is the CEO of Crossbow Communications, author of several books and producer of documentaries about health and environmental issues around the world. Chandler is connecting the dots to the global surge in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and other forms of prion disease. The scientific name for prion disease is transmissible spongiform encephalopathy.