Although there are currently over 5 million Americans over 65 living with Alzheimer’s disease in the United States, according to the Alzheimer’s Association, there are still many major misconceptions that patients, loved ones, caregivers and doctors are confronted with daily.
We consulted several Alzheimer’s and dementia experts — both with medical and personal experience — to set the record straight. Here are some of the most common myths about dementia and misconceptions about Alzheimer’s disease they hear on a regular basis and the actual truth behind them all.
1. All Alzheimer’s cases are genetic.
The truth: Another common misconception is that family members of an individual with Alzheimer’s should worry that they, too, will get this form of dementia. Although 50% of cases have a genetic link, or a 50% chance of a parent passing it on to his or her child, this is not set in stone, according to Dr. Paul E. Kaloostian, a neurosurgeon and diplomat of the American Board of Neurological Surgery in California. “Just because you have a family member that has Alzheimer’s, does not mean you will get it,” he says.
London adds that regardless of your family history, living a longer life is associated with an eventual diagnosis. According to the Alzheimer’s Association, the risk of Alzheimer’s doubles every five years after 65. And the risk reaches nearly one-third after 85.
2. Alzheimer’s is not deadly.
The truth: Alzheimer’s is actually the sixth leading cause of death in America.
“While the actual neurological impairments Alzheimer’s causes are not direct causes of death,” says Dr. Christine Bishara, an internal medicine physician in New York City, “they do lead to increased risk of death.”
Death in Alzheimer’s patients is usually the result of secondary factors, like forgetting to eat or drink (which leads to dehydration), infections and aspiration pneumonia, explains Bishara. She says this misconception comes from the fact that Alzheimer’s is mainly a disease diagnosed in older adults, so there are frequently concurrent conditions associated with those who have it, which may take the blame.
3. Prescription drugs can reverse Alzheimer’s disease.
The truth: The current medications that are used for Alzheimer’s dementia, such as Aricept and Namenda, can, at best, slow down the progression of the disease, says Dr. Lenny Cohen, a neurologist in Chicago.
Bishara believes this myth stems from a misunderstanding of how the medications work because they temporarily — but not permanently — improve symptoms. “The medications currently available for Alzheimer’s work by allowing certain neurotransmitters, such as acetylcholine, and chemicals in the brain to be broken down more slowly, thus increasing these levels in the brain,” she notes.
Prescribed medications can also help with controlling some of the common symptoms associated with Alzheimer’s, such as agitation, or aid with memory by helping nerve cells transmit signals, Bishara adds. But they won’t entirely curb progression of the disease.
4. People with Alzheimer’s don’t know what’s going on around them.
The truth: Even in advanced stages, patients can feel emotions, even though they commonly are unable to express themselves, says Cohen. “I compare patients in advanced stages of dementia to 2-year-old kids whose brains did not develop yet,” he notes. “In the case of AD, their brain unfortunately is affected dramatically but patients can still process information.”
He believes this myth is based on assumptions about patients with severe dementia who do have trouble processing information. “The natural human, ‘knee-jerk reaction’ is that problems with processing information are equal to lack of awareness,” he says.
5. Certain vaccines can cause Alzheimer’s.
The truth: “Several studies looking into the correlation of Alzheimer’s and prior vaccine administration have shown no evidence to suggest a link,” says Bishara.
In fact, studies found that those who received flu and pneumonia vaccines actually had at least 17% lower incidence of Alzheimer’s. “The biological mechanism of this is unclear but appears to be due to the fact that those who have regular vaccinations tend to live healthier lifestyles with less risk factors,” notes Bishara.
6. There’s only one type of Alzheimer’s disease.
The truth: There are actually six different subtypes of Alzheimer’s, according to Dr. Scott Noorda, a family physician in Utah and creator of the Brainlift Neuroprotective Program, which were discovered by an internationally recognized expert in the mechanisms of neurodegenerative diseases named Dr. Dale Bredesen.
These types of Alzheimer’s include:
Inflammatory. Chronic inflammation is a primary contributor to neurodegeneration and Alzheimer’s disease, specifically the inflammatory subtype.
Atrophic. The atrophic Alzheimer’s subtype is associated with a “failure to thrive” brain that lacks growth factors as well as an ability to create new neural networks.
Glycotoxic. The glycotoxic subtype of Alzheimer’s disease consists of elements of both the inflammatory and atrophic subtypes. “However, it is unique in that the damage to the brain is specifically due to elevated levels of blood sugar (glucose) and insulin,” says Noorda.
Toxic. Chronic low-level toxin exposures can have a large impact on brain health and performance because toxins are fat-soluble, explains Noorda. Toxins in your body tend to accumulate in fatty tissues, and your brain is primarily fatty tissue.
Vascular. Vascular disease is associated with an increased risk of degenerative Alzheimer (plaque and tangle) pathology, either by increasing its rate of formation or reducing elimination from the brain or a mixture of the two.
Traumatic. This subtype is caused by either major head trauma or recurrent smaller head and brain injuries that accumulate over time.
“With so many different factors playing into it and multiple root causes that build on each other, this is why there are no effective drugs, despite billions of dollars of research,” says Noorda. “One drug addressing just one factor isn’t enough to make a difference in one of the most complex diseases we face. Recognizing different subtypes allows us to narrow down the root causes and address those issues head on.”
7. People with Alzheimer’s can’t be happy.
The truth: Alzheimer’s disease does not strip away a person’s emotions, according to Cohen. He asserts that the idea that AD patients are destined to be unhappy is a projection by caregivers.
Mathew Abraham, a lawyer from Texas who spent four years as a full-time caregiver for his grandmother after her Alzheimer’s diagnosis, says he initially bought into this misconception. But he soon found himself sharing light and happy moments with his grandmother. “Those were meaningful moments, and I could see that she enjoyed and understood their value as much as I did,” he notes.
8. People with dementia can’t participate in everyday activities.
The truth: While it is true that as the disease progresses, tasks that require information processing, communication and memory, become increasingly difficult, people with Alzheimer’s can continue to engage in meaningful activities if they are adapted to meet the person where they are at physically and cognitively, says Laura Gitlin, an applied research sociologist and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia.
This misconception is drivenby the fact that neurological and other standardized tests focus on what a person can’t do. But people are affected differently, and therefore, what one person struggles with may not be an issue for another.
She offers an example of a former librarian suffering from dementia and vision loss who found she enjoyed doing a large letter puzzle. Despite her cognitive decline, this was a fitting, adapted activity, given her previous occupation.
9. “You have to be old to be diagnosed with Alzheimer’s.”
The truth: Age is simply associated with a higher risk of developing Alzheimer’s or another form of dementia, says Cohen.
It’s estimated that approximately 200,000 people in the United States have early onset Alzheimer’s in their 40s and 50s, according to the Alzheimer’s Association. That is 5% of the more than 5 million Americans with Alzheimer’s, and unfortunately, doctors do not yet have a full understanding why those at such a young age can develop it.
10. “Getting Alzheimer’s is a normal part of aging.”
The truth: Alzheimer’s disease progresses over time — an abnormal state that requires assessment, explains Gitlin. Still, this misconception is all too common. A 2014 survey found that 59% of people incorrectly believe that Alzheimer’s disease is a typical part of aging.
11. Forgetting names is a key sign of Alzheimer’s.
The truth: When a young person forgets the name of a well-known actor or what they walked into a room to get, the common joke is “I must have Alzheimer’s.” “The truth is, Alzheimer’s disease impairs greater, more significant thoughts that have a larger impact on daily routine and decision making,” explains Susan London, a licensed master social worker and director of social work at Shore View Nursing and Rehabilitation Center in Brooklyn, New York.
Writing checks is an example of this. “People with Alzheimer’s disease might not remember how to fill a check out completely, if at all, or what it would mean once the check leaves their hands,” says London. “This is largely why there is so much financial abuse and exploitation that occurs — just because dad can physically sign his name does not mean he knows what he is signing.”
Misplacing objects or forgetting names are common mishaps — not signs of Alzheimer’s. “Forgetting your car keys is one thing, but if you find your car keys, but you don’t know how to use them or what they are for, that is not normal aging,” says Gitlin.
She offers a few other signs that may prompt a cognitive evaluation:
Getting lost in familiar places.
Forgetting how to use common objects.
Being unable to engage in problem-solving.
Struggling to complete activities.
12. My loved one is going to wake up and forget who I am.
The truth: “Alzheimer’s disease and other dementia-related conditions develop and progress over time, with some individuals being able to live as long as 20 years after their diagnosis,” says London. “It is not as dramatized as you see in movies.”
In other words, it could take quite a while, if at all, for a person to forget their loved ones. “Quite often, this would occur in the final stages,” adds London. “Perhaps fortunately, the disease prepares the family for this kind of loss over time.”
For instance, one day your loved one might forget where they put their wallet or how to fill out an expense report, and over time, forget how to put on jewelry or tie their shoes. These losses progress over time and become more severe, trying and impeding upon daily routine.
The bottom line
Understanding the truth surrounding this condition can make it easier to support a patient or loved one after an Alzheimer’s diagnosis. The sooner we clear up misconceptions, not only will we be able to help those suffering but also increase awareness for earlier diagnosis.