Neurologists Struggle With Diagnosis, Disclosure
Diagnosing a person with neurodegenerative disease is challenging enough for neurologists, but sharing the diagnosis with patients and their families is proving to be equally challenging. Unfortunately, the gravity of such a diagnosis is immense for all stakeholders. Life-changing decisions are hanging in the balance. Answers begin with the truth. Unfortunately, the truth is rarely part of the equation regarding neurodegenerative disease.
Neurodegenerative disease as a whole, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease has been surging around the world for the past 50 years. It is the fastest-growing cause of death in the world. The human epidemic is so severe and so contagious that it is spreading to livestock and wildlife thanks to the mismanagement of infectious waste.
Contrary to popular belief, the rising surge of neurodegenerative disease has more to do with neurotoxins than age. Neurodegenerative disease will become even more prevalent thanks to misinformation, disinformation and overall mismanagement. Neurodevelopmental disease, including autism, has mirrored the global spread of neurotoxins and neurodegenerative disease.
More than 6.7 million people in the U.S. alone are living with Alzheimer’s disease. The actual number is much higher, thanks to millions who are undiagnosed and misdiagnosed.
The Truth About Neurodegenerative Disease
- Most forms of neurodegenerative disease are related. The biggest difference is which region of the brain is under attack.
- Most forms of neurodegenerative disease are more accurately described as prion disease, which is caused by a deadly and unstoppable form of protein known as a prion. The clinical term for prion disease is transmissible spongiform encephalopathy (TSE). The most important thing to remember about TSE is that this class of brain disease is transmissible between people and other mammals.
- Diagnosing Alzheimer’s disease, in particular, is not a science. It’s a process of elimination and an educated guess. If the symptoms are severe, neurologists might diagnose the person with Creutzfeldt-Jakob disease (CJD).
- If the person is diagnosed with CJD (just a guess), doctors and medical facilities will take extreme precautions to avoid contact with that person to avoid transmission of the disease (via bodily fluids or skin). In many cases, they will avoid making such a diagnosis because it opens the door to liability regarding prion contamination. Families and caregivers, however, are not warned about the transmissible nature of CJD. Criminal negligence.
- Unfortunately, Alzheimer’s disease and Parkinson’s disease are forms of prion disease. No warnings are issued to caregivers and family. The entire bodies of victims are contagious. A sneeze can be lethal. A contaminated cup or fork is a biohazard that can infect an entire family over years and years (prions migrate and mutate, but don’t stop. I haven’t heard a peep from the Alzheimer’s Association, CJD Foundation or the American Association of Neurologists. Criminal negligence. Where is the scientific proof hat Alzheimer’s disease, Parkinson’s disease and CJD are not transmissible?
Unfortunately, there is not a cure for neurodegenerative disease. Our best defense is the truth, which is in short supply. As part of our truth campaign, it’s important to know that pharmaceuticals keep failing in clinical trials. Researchers are starting to target the prions and protein formations in the brain with antibodies. Purging these neurotoxins from our bodies is part of the equation, but stopping the infectious cycle of prions will be the final frontier of prevention and treatment.
This year, the national cost of caring for individuals living with Alzheimer’s disease and other forms of dementia is projected to reach $345 billion in the U.S. alone. — a $24 billion increase from a year ago.
The Truth About Your Diagnosis
A new report from the Alzheimer’s Association reports that individuals with memory concerns and their doctors are not routinely discussing the issue, missing a critical first step toward diagnosis and potential treatment.
In fact, a few years ago, the Alzheimer’s Association found that just 45 percent of people with Alzheimer’s disease or their caregivers are told their diagnosis by their doctor. When the data excluded information shared with caregivers, the disclosure rate dropped to 33 percent.
“How is it OK that someone is going into their doctor’s office and not getting a diagnosis for a fatal, progressive disease?” says Beth Kallmyer, vice president of constituent services at the Alzheimer’s Association.
Many doctors do not inform patients of their diagnosis because they do not want to cause the patient emotional distress, the report found. Yet, according to the report, patients who find out their diagnosis often do not become depressed or have other long-term emotional problems.
“This is a fatal disease, and it is pretty difficult to get the diagnosis. But there are lots of other fatal diseases a doctor give diagnoses for,” Kallmyer points out.
Keith Fargo, director of scientific programs and outreach for medical and scientific relations at the Alzheimer’s Association, says when patients experience forgetfulness and other symptoms, they want to know that there is a reason. “You’re experiencing [the symptoms] whether you are told the diagnosis or not,” he explains. “Now you can put a name on it, now you can plan for your long-term care, now you can make your legal and financial planning, and put together a care team. … There are lots of benefits to learning your diagnosis.”
Another finding in the report show doctors are more likely to tell patients their diagnosis when the disease became more advanced, a fact the association found particularly concerning. Alzheimer’s is a progressive brain disease, which interferes with thoughts, memory and language. As it develop s, a person can become dependent on others for daily living. People with Alzheimer’s can live for about four to 20 years as the disease continues to kill their nerve cells; the worsening symptoms could make someone unable to seek care and treatment if they don’t do so early on.
“If doctors don’t give people the diagnosis, they are robbing people of the opportunity of making those decisions,” Kallmyer says. “They don’t have a right to do that.”
Other reasons medical providers cited for not disclosing the disease include diagnostic uncertainty, time constraints, lack of support, communication difficulties, patient or caregiver wishes and stigma. The Alzheimer’s Association says not enough resources and education are in place to help medical providers in presenting the diagnosis to patients.
The American Academy of Neurology (AAN), recently updated ethical guidance for neurologists and neuroscience professionals who care for people with Alzheimer’s disease and other forms of neurodegenerative disease (published in the July 12, 2021 online issue of Neurology® (the first update since the position statement was developed in 1996 by the Ethics, Law, and Humanities Committee, a joint committee of the American Academy of Neurology, American Neurological Association and Child Neurology Society).
“Dementia care and scientific understanding have advanced considerably, including greater recognition of non-Alzheimer’s dementias and advances in genetics, brain imaging and biomarker testing,” said position statement author Winston Chiong, MD, PhD, of the University of California San Francisco and a member of the AAN’s Ethics, Law, and Humanities Committee. “This American Academy of Neurology position statement focuses on day-to-day ethical problems faced by clinicians, patients and families in the course of dementia care.”
The AAN position statement notes that communicating a diagnosis can be ethically challenging. Some families may request withholding a diagnosis from their loved one, but that may deprive the person of important opportunities to plan for future needs. In most cases, the statement says family members’ fears about potential emotional harm can be lessened by compassionate disclosure and so it recommends ways to communicate serious information.
Unfortunately, none of these associations has not taken a position about disclosing the infectious nature of prion disease. Neurologists are routinely making rapid diagnoses from across the room. They don’t want to be in the same room as someone with prion disease. They don’t want to touch these patients and they are reluctant to conduct autopsies. Morticians won’t touch these bodies (when properly informed). The risks to families, caregivers and society as a whole is extreme. Thanks to misinformation, disinformation and a disrespect for life, prion contamination has spread far and wide. The body count is staggering.
There are proven strategies to help avert neurodegenerative disease, including smart nutrition, exercise and prion aversion. There is not a cure for prion disease, but smart nutrition can ease the symptoms. Smart nutrition also can help you and your family avert neurodegenerative disease. Preview and order the eBook now to defend yourself and your family.
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.