Transmissible Spongiform Encephalopathy
Alzheimer’s disease is a member of an aggressive family of neurodegenerative diseases known as transmissible spongiform encephalopathy (TSE). The operative word is “transmissible.”
TSEs are caused by a deadly protein called a prion (PREE-on). Prion disease is unstoppable. The pathogen spreads through the bodily fluids and cell tissue of its victims. Blood, saliva, mucus, milk, skin, urine and feces carry deadly prions from the victim. All tissue and all bodily fluids are infectious. A cough, sneeze or contaminated utensil can be lethal.
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 often become infectious long before they appear sick.
Prions kill everything in their path—man or beast. Prions are highly infectious and the bodies of victims become highly infectious long before they look or feel sick. Blood, milk, meat, urine, saliva, mucus, feces and other bodily fluids of victims are contagious.
It’s time to underscore the risks that caregivers must manage when caring for clients, friends and loved ones with dementia. In addition to protecting themselves, caregivers can minimize the chances of infecting others with deadly prions.
According to research from Duke University, caregivers of someone with dementia are six times more likely to develop the condition themselves.
Even sophisticated healthcare systems have failed to grasp the severity of prion disease. Unfortunately, hospitals around the world have been sued for spreading Creutzfeldt-Jakob (CJD) to innocent patients. Most health care systems are still misinformed and under-informed about the dangers that CJD patients pose to others. Therefore, these care facilities are exposing others and contributing to a global mismanagement problem.
Before you dismiss the prion threat as science fiction, call your local coroner. Most coroners refuse to touch the body of someone who likely died of CJD. They should be cautious with anyone who had any form of dementia upon death. All dementia patients and their bodies demand special handling and burial to avoid infecting others.
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 and prion disease. President Obama awarded Prusiner the National Medal of Science in 2010 to recognize the importance of his research. Important reforms to policies to protect public health, however, have been elusive.
Prion disease also is known as transmissible spongiform encephalopathy (TSE). The operative word is “transmissible.” Prusiner claims that all forms of TSE are caused by infectious prions.
“Alzheimer’s disease (AD) is the most common neurodegenerative disease in humans and will pose a considerable challenge to healthcare systems in the coming years,” said Dr. Prusiner. “Aggregation of the β-amyloid (Aβ) peptide within the brain is thought to be an initiating event in AD pathogenesis. Many recent studies in transgenic mice have provided evidence that Aβ aggregates become self-propagating (infectious) during disease, leading to a cascade of protein aggregation in the brain, which may underlie the progressive nature of AD. The ability to self-propagate and the existence of distinct strains reveals that Aβ aggregates exhibit many properties indistinguishable from those of prions composed of PrPSc proteins. The evidence that Aβ can become a prion during disease, Aβ prions may be important for understanding the pathology of AD.”
Only a decade ago, the idea that Alzheimer’s disease might be transmissible between people would have been laughed away. But scientists have now shown that tissues can transmit symptoms of the disease between animals. A new study published in the journal Nature raises additional concern about the transmissibility of Alzheimer’s disease between people.
“This is the first evidence of real-world transmission of amyloid pathology,” says molecular neuroscientist John Hardy of University College London (UCL). “It is potentially concerning.”
Prion disease is a spectrum disease because of its many mutations and because some victims appear to have a genetic predisposition to resist the disease. Some prions can kill people within weeks of exhibiting clinical symptoms, while others can take years. Others may not fall victim to the disease, but can still carry the pathogen internally and externally. Victims become infectious long before they appear sick. Their bodily fluids proceed to contaminate the world around them.
Nearly 15 million caregivers in the US work with someone who has Alzheimer’s disease, and approximately 70 percent of Alzheimer’s patients are cared for by relatives and friends.
Caring for a person with Alzheimer’s disease can have high physical, emotional, and financial costs. The demands of day-to-day care, changing family roles, and difficult decisions about placement in a care facility is challenging for everyone involved.
Don’t be afraid to share your thoughts and experiences with others whom you trust. If you are likely to become a caregiver, you might need to explore options at work that will give you and others in your family some additional flexibility. Build a solid support network within your family and among your closest friends to help absorb the physical and emotional demands. Do you know people who are going through a similar experience?
Becoming well informed about the disease is an important long-term strategy. Programs that teach families about Alzheimer’s are available online and in most communities.
Some Alzheimer’s caregivers have found that participating in a support group is a critical lifeline. These support groups allow caregivers to find respite, express concerns, share experiences, get tips, and receive emotional comfort. There are a growing number of groups for people in the early stage of Alzheimer’s and their families. Support networks can be especially valuable when caregivers face the difficult decision of placing a loved one in a nursing home or assisted living environment.
- Be supportive. Talk to your friend/relative in the early stages of the disease about the type of care they want to receive in the later stages.
- Be practical. Although distressing, help your friend/relative manage legal issues such as power of attorney and a living will as quickly as possible. Once their competency passes, it might eliminate important options for family members.
- Find support for yourself. Join a support group and find all forms of community support available to you. You can’t afford to miss a step or get sick, so you are a priority.
- Be alert for their safety.
- Provide a quiet, unstressed environment.
- Maintain their personal hygiene.
- Maintain a toilet routine.
- Offer small, nutritious meals.
- Make sure they drink lots of water.
- Monitor their sleep habits.
- Don’t be judgmental.
Many families are choosing to have their loved ones with Alzheimer’s disease move in with them. Others are moving in with their loved ones to let them stay in familiar environments. It’s happening in millions of homes around the world today. The risks are real.
Regular, nutritious meals may become a challenge for people with dementia. As a person’s cognitive function declines, he or she may become overwhelmed with too many food choices, forget to eat or have difficulty with eating utensils. Proper nutrition is important to keep the body strong and healthy. For a person with Alzheimer’s disease or dementia, poor nutrition may increase behavioral symptoms and cause weight loss.
The basic nutrition tips below can help people with dementia and caregivers.
- Provide a balanced diet with a variety of foods. Offer vegetables, fruits, whole grains, low-fat dairy products and lean protein foods.
- Limit foods with high saturated fat and cholesterol. Some fat is essential for health — but not all fats are equal. Go light on fats that are bad for heart health, such as butter, solid shortening, lard and fatty cuts of meats.
- Cut down on refined sugars. Often found in processed foods, refined sugars contain calories but lack vitamins, minerals and fiber. You can tame a sweet tooth with healthier options like fruit or juice-sweetened baked goods. But note that in the later-stages of Alzheimer’s disease, if loss of appetite is a problem, adding sugar to foods may encourage eating.
- Limit foods with high sodium and use less salt. Most people in the United States consume too much sodium, which affects blood pressure. Cut down by using spices or herbs to season food as an alternative.
As Alzheimer’s disease progresses, loss of appetite and weight loss may become concerns. In such cases, the doctor may suggest supplements between meals to add calories.
Staying hydrated may be a problem as well. Encourage fluids by offering small cups of water or other liquids throughout the day or foods with high water content, such as fruit, soups, milkshakes and smoothies.
During the middle and late stages of Alzheimer’s disease, distractions, too many choices, and changes in perception, taste and smell can make eating more difficult. The following tips can help:
- Limit distractions.
Serve meals in quiet surroundings, away from the television and other distractions.
- Keep the table setting simple.
Avoid placing items on the table — such as table arrangements or plastic fruit — that might distract or confuse the person. Use only the utensils needed for the meal.
- Distinguish food from the plate.
Changes in visual and spatial abilities may make it tough for someone with dementia to distinguish food from the plate or the plate from the table. It can help to use white plates or bowls with a contrasting color placemat. Avoid patterned dishes, tablecloths and placemats.
- Check the food temperature.
A person with dementia might not be able to tell if something is too hot to eat or drink. Always test the temperature of foods and beverages before serving.
- Serve only one or two foods at a time.
Too many foods at once may be overwhelming. Simplify by serving one dish at a time. For example, mashed potatoes followed by meat.
- Be flexible to food preferences.
Keep long-standing personal preferences in mind when preparing food, and be aware that a person with dementia may suddenly develop new food preferences or reject foods that were liked in the past.
- Give the person plenty of time to eat.
Remind him or her to chew and swallow carefully. Keep in mind that it may take an hour or longer to finish eating.
- Eat together.
Make meals an enjoyable social event so everyone looks forward to the experience. Research suggests that people eat better when they are in the company of others.
- Keep in mind the person may not remember when or if he or she ate.
If the person continues to ask about eating breakfast, consider serving several breakfasts — juice, followed by toast, followed by cereal.
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.