Caregivers At Risk In Battle Against Brain Disease

Spouses Of Those With Brain Disease More Likely To Contract Brain Disease

Millions of people are becoming caregivers for friends and family members with Alzheimer’s disease. It’s a silent epidemic that’s creating family crises around the world. In addition to the shock of the sudden dependency, at least some caregivers (family members and professionals) are being misinformed and exposed to deadly pathogens that can spread the disease.

“A good caregiver who understands the disease, its symptoms and progression is crucial to the overall well-being of people with Alzheimer’s disease,” said Dr. Fred Kobylarz, a dementia expert at the Robert Wood Johnson Medical School at Rutgers University. “Alzheimer’s has become pervasive in the United States and around the world. It affects people in all walks of life,” Kobylarz said. “It is a problem that needs action and attention.”

Memory problems are typically one of the first signs of cognitive impairment related to Alzheimer’s disease. Some people with memory problems have a condition called mild cognitive impairment (MCI). In MCI, people have more memory problems than normal for their age, but their symptoms do not interfere with their everyday lives. Movement difficulties and problems with the sense of smell have also been linked to MCI. Older people with MCI are at greater risk for developing Alzheimer’s disease, but not all do. Some may even go back to normal cognition.

The first symptoms of Alzheimer’s disease vary from person to person. For many, decline in non-memory aspects of cognition, such as speech, vision, and impaired reasoning or judgment, may signal the very early stages of Alzheimer’s disease.

Alzheimer's disease treatment

Researchers are studying biomarkers (brain images, cerebrospinal fluid, and blood) to see if they can detect early changes in the brains of people with MCI and in cognitively normal people who may be at greater risk for Alzheimer’s. Studies indicate that such early detection may be possible, but more research is needed before these techniques can be relied upon to diagnose Alzheimer’s disease in everyday medical practice.

For instance, people early on might show signs of memory loss that don’t affect their ability to function day to day. “Some memory loss can also be a sign of the normal aging process,” Kobylarz explained.

“Families should look for memory impairment and trouble managing aspects of their daily lives — like paying bills or taking their medication,” he said.

It’s also important to know your family history and share that with your doctors, Kobylarz said. Though older age is the biggest risk factor for Alzheimer’s, he explained, genetics and family history also play a role.

If you notice worrisome changes in an older family member, talk with a doctor, he said.

Scientists don’t yet fully understand what causes Alzheimer’s disease in most people. There is a genetic component to some cases of early-onset Alzheimer’s disease. Late-onset Alzheimer’s arises from a complex series of brain changes that occur over decades. The causes probably include a combination of genetic, environmental, and lifestyle factors. The importance of any one of these factors in increasing or decreasing the risk of developing Alzheimer’s may differ from person to person.

Alzheimers disease epidemic

To diagnose Alzheimer’s, doctors often:

  • Ask the person and a family member or friend questions about overall health, past medical problems, ability to carry out daily activities, and changes in behavior and personality;
  • Conduct tests of memory, problem solving, attention, counting, and language;
  • Carry out standard medical tests, such as blood and urine tests, to identify other possible causes of the problem; and
  • Perform brain scans, such as computed tomography (CT), magnetic resonance imaging (MRI), or positron emission tomography (PET), to rule out other possible causes for symptoms.

These tests may be repeated to give doctors information about how the person’s memory and other cognitive functions are changing over time. If the diagnosis is Alzheimer’s, beginning treatment early in the disease process may help preserve daily functioning for some time, even though the underlying disease process cannot be stopped or reversed. An early diagnosis also helps families plan for the future. They can take care of financial and legal matters, address potential safety issues, learn about living arrangements, and develop support networks.

In addition, an early diagnosis gives people greater opportunities to participate in clinical trials that are testing possible new treatments for Alzheimer’s disease or other research studies.

Alzheimer’s disease can be definitely diagnosed only after death, by linking clinical measures with an examination of brain tissue in an autopsy.

People with memory and thinking concerns should talk to their doctor to find out whether their symptoms are due to Alzheimer’s or another cause, such as stroke, tumor, Parkinson’s disease, sleep disturbances,side effects of medication, an infection, or a non-Alzheimer’s dementia. Some of these conditions may be treatable and possibly reversible.

Alzheimer’s cannot yet be cured, but medications and lifestyle changes can often help slow the progression of the disease, Kobylarz said. This requires the doctor, patient and family to work together to develop a plan to maintain cognitive function, he added.

Caring for a person with Alzheimer’s disease can have high physical, emotional, and financial costs. The demands of day-to-day care, changes in family roles, and decisions about placement in a care facility can be difficult. There are several evidence-based approaches and programs that can help, and researchers are continuing to look for new and better ways to support caregivers.

Becoming well-informed about the disease is one important long-term strategy. Programs that teach families about the various stages of Alzheimer’s and about ways to deal with difficult behaviors and other caregiving challenges can help.

Prion disease and Alzheimer's disease

Which Forms Of Neurodegenerative Disease Are Contagious

Dr. Stanley Prusiner, an American neuroscientist from the University of California at San Francisco, earned a Nobel Prize in 1997 for discovering and characterizing prions (PREE-ons) and prion disease, also known as transmissible spongiform encephalopathy (TSE). The operative word is “transmissible.” Prions are a deadly and unstoppable form of protein that migrates, mutates, multiplies and kills with unparalleled efficiency. Prions cause fatal neurodegenerative diseases in humans and animals by converting the cellular prion protein PrPC into aggregation-prone PrPSc.

President Obama awarded Prusiner the National Medal of Science in 2010 to recognize the importance of his research. Unfortunately, Prusiner’s science is being ignored and we all are facing a public health disaster because of the negligence and reckless disregard for public health. Misinformed caregivers, family members, healthcare workers and others are caught in the crossfire of a deadly contagion known as a prion.

TSE is a spectrum disease also known as prion disease. The spectrum includes Alzheimer’s disease, Parkinson’s disease and an extremely aggressive version known as Creutzfeldt-Jakob disease. Prusiner claims that all forms of TSE are caused by infectious prions. The prion spectrum varies in severity. It also varies depending on which region of the brain is impacted first. When the presenting symptom is memory loss, the diagnoses flow along the following chart.

prion disease spectrum

Prion disease causes memory loss, impaired coordination, and abnormal movements. Abnormal proteins are now associated with autism. In fact, it appears that the biggest difference between the neurodegenerative disease spectrum and autism spectrum disorders is age. Both spectrums share common environmental causes and pathologies.

Caregivers Misinformed

It’s not known which patients with brain disease become infectious or when, but both CJD and Alzheimer’s patients are being mismanaged. Informed neurologists won’t touch patients with these symptoms because of the risk of transmission. They are making diagnoses from across the room.

“Creutzfeldt-Jakob disease behaves like Alzheimer’s disease on steroids,” said Dr. Jennifer Majersik, an associate professor of neurology at the University of Utah.

According to neuroscientists Dr. Laura Manuelidis, at least 25 percent of Alzheimer’s diagnoses are not Alzheimer’s disease. These misdiagnoses are actually CJD, which is further up the prion spectrum. CJD, without dispute, is extremely infectious to caregivers and loved ones but it has not been declared a reportable disease in the U.S. and many other nations. Millions of cases of deadly CJD are being misdiagnosed as Alzheimer’s disease. Millions of patients and caregivers are being misinformed, misguided and exposed to an aggressive disease. Misdiagnosis and misinformation regarding prion disease is a matter of life and death. The disease is now striking young people, including teenagers, with much greater frequency. It’s also killing clusters of people in the same communities with greater frequency. The mismanagement doesn’t end here.

Studies confirm that people and animals dying of prion disease contaminate the environment around them because infectious prions are in the urine, feces, blood, mucus and saliva of each victim. These infectious bodily fluids are contributing to the rapid spread of Alzheimer’s and other mutations of prion disease.

“There has been a resurgence of this sort of thinking, because there is now real evidence of the potential transmissibility of Alzheimer’s,” says Thomas Wiesniewski M.D. a prion and Alzheimer’s researcher at New York University School of Medicine. “In fact, this ability to transmit an abnormal conformation is probably a universal property of amyloid-forming proteins (prions).”

Alzheimer's disease research

Caregivers and other stakeholders are caught in the crossfire of misinformation and mismanagement. At the most basic level, this means that a sneeze, a drinking glass and eating utensils are permanent pathways of disease transmission. Anything that ever comes into contact with the bodily fluids of a victim is impossible to sterilize.

On a larger level, it means that entire communities and watersheds are at risk of permanent contamination from just a single victim, not to mention thousands of infectious victims. Alzheimer’s disease is an environmental nightmare–it’s a real-world version of Pandora’s box.

A study published in the journal Nature adds to the evidence about the transmissibility of Alzheimer’s disease between people. A second study by the same scientist in early 2016 adds to the claim. Meanwhile, there is absolutely no evidence to the contrary. Even wildlife are contracting brain disease from people because of the dumping of infectious waste on farms, ranches and forests.

Surgical instruments infected with prions, for example, are impossible to sterilize and hospitals throw them away. Prions are in the blood, saliva, urine, feces, mucus, and bodily tissue of its victims. Many factors are contributing to the epidemic. Prions are now the X factor. Industry and government are not accounting for prions or regulating them. They are ignoring the threat completely, which violates the Bioterrorism Preparedness and Response Act of 2002 in the United States. Other nations also are ignoring laws developed to protect food, air and water.

More Mismanagement Of Prion Disease

When the U.S. government enacted the Bioterrorism Preparedness and Response Act of 2002, it classified prions as select agents that pose an extreme risk to food, water and much more. Only two labs in the U.S. were allowed to handle them for research purposes. Unfortunately, the CDC quietly took prions off the list because the regulation criminalized entire industries and several reckless practices.

The U.S. Environmental Protection Agency (EPA) has confirmed that prions are in sewage and that there has been no way to detect them or stop them. As such, the EPA has never issued guidance on prion management within wastewater treatment plants.

land application sewage sludge

Unfortunately, the EPA’s risk assessment on sewage sludge and biosolids were prepared before the world of science knew about prions. The agency continues to cling to it’s antiquated sludge rule crafted back in the dark ages. It does, however, consider prions a “emerging contaminant of concern.” Meanwhile, its outdated risk assessments are promoting a public health disaster. The neurotoxins found in sewage, including heavy metals, also are contributing to the global spike in autism, which follows the same timing and trajectory as the spike in neurodegenerative diseases.

“Since it’s unlikely that the sewage treatment process can effectively deactivate prions, adopting measures to prevent the entry of prions into the sewer system is advisable,” said the Toronto Department of Health, November 2004.

Once unleashed on the environment, prions remain infectious. They migrate, mutate and multiply as they infect crops, water supplies, wildlife, livestock, sea mammals and humans. According to prion researcher Joel Pedersen at the University of Wisconsin, prions in soil become up to 680 times more infectious. From there, they migrate, mutate and multiply. It’s a real world version of Pandora’s Lunchbox.

“Our results suggest that if prions enter municipal wastewater treatment systems, most of the agent would bond to sewage sludge, survive anaerobic digestion, and be present in treated biosolids,” Pedersen said. “Land application of biosolids containing prions represents a route for their unintentional introduction into the environment. Our results emphasize the importance of keeping prions out of municipal wastewater treatment systems.

Pedersen also found that sewage treatment does not inactivate prions. Therefore, prions are lethal, mutating, migrating and multiplying everywhere sewage is dumped.

Prions could end up in sewage treatment plants via slaughterhouses, hospitals, dental offices and mortuaries just to name a few of the pathways. The disposal of sludge represents the greatest risk of spreading prion contamination in the environment. Plus, we know that pathogens, pharmaceutical residue and chemical pollutants found in sewage sludge are taken up by plants and vegetables.”

TSEs also include mad cow disease and chronic wasting disease in the deer family. Few, if any, mammals are immune. Thanks to the mismanagement of infectious waste, including sewage, the animal world is contracting prion disease from humans. They also are passing it among themselves via their own bodily fluids. Species barriers are a myth.

Unfortunately, prions linger in the environment, homes, hospitals, nursing homes, dental offices and beyond infinitely. Prions defy all attempts at sterilization and inactivation. If they can’t stop prions in the friendly and sterile confines of an operating room, they can’t stop them in the wastewater treatment plant.

biosolids land application

The risk assessments prepared by the U.S. EPA for wastewater treatment and sewage sludge are flawed and current practices of recycling this infectious waste is fueling a public health disaster. Many risks are not addressed, including prions and radioactive waste. They don’t mention prions or radiation because there is no answer. Most nations are making the same mistake. We’re dumping killer proteins on crops, parks, golf courses, gardens, ski areas, school grounds and beyond. Wind, rain and irrigation spread these contaminants and many more throughout our communities and watersheds.

Failure to account for known risks is negligent. Crops for humans and livestock grown in sewage sludge absorb prions and become infectious. We’re all vulnerable to neurotoxins and right now due to widespread denial and mismanagement. It’s time to stop the land application of sewage sludge (LASS) in all nations. Safer alternatives exist.

Alzheimer's disease public relations firm

Crossbow Communications specializes in issue management and public affairs. Alzheimer’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and the prion disease epidemic is an area of special expertise. Please contact Gary Chandler to join our coalition for reform gary@crossbow1.com.

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