Sorting Dementia Facts from Myths

Misunderstandings and misinformation surround conditions that lead to memory and cognitive decline.

An estimated 50 million people around the world have dementia, with millions of new cases diagnosed every year. But for a condition that affects so many people, it is one that remains largely misunderstood. Sorting through dementia facts and myths can be confusing, but it’s a worthwhile effort if you or a loved one is affected by the disease.

In short, having dementia means having brain cells that have been damaged, resulting in lost memory and thinking skills. Dementia is an acquired loss of cognition severe enough to lead to a loss of functional independence (as opposed to a condition you are born with, such as mental retardation).

What follows are eight dementia facts aimed at countering some common myths. Deborah Blacker, MD, with Massachusetts General Hospital, provides some perspective on these long-held, but incorrect ideas.

#1 Dementia is the same as Alzheimer’s disease.

“This isn’t so much a myth as a misunderstanding,” Dr. Blacker says. “Alzheimer’s disease (AD) is one form of dementia.” Think of it this way: Alzheimer’s disease is to dementia as banana is to fruit. Dr. Blacker explains that Alzheimer’s disease is an underlying disease process that leads to dementia. The process begins long before memory symptoms begin.

#2 Alzheimer’s disease isn’t fatal.

“Alzheimer’s is indeed fatal, but because it has a very long course (10 to 20 years) and begins late in life, most people with the disease die from something else,” Dr. Blacker says. But Alzheimer’s takes such a toll on brain health, it can lead to fatal complications. For example, difficulty swallowing is a common symptom of advanced Alzheimer’s disease. That can cause a person to inhale food or liquids into their lungs, causing pneumonia. A person who forgets to eat or has trouble eating can become malnourished, which can lead to other complications, such as a weakened immune system.

#3 Dementia is an inevitable part of aging.

“Many people live to a very old age without cognitive loss,” Dr. Blacker says. “However, it should be noted that while not inevitable it is very common in late life. The prevalence of dementia in people over the age of 85 is estimated at 35 to 50 percent.”

#4 Nothing can be done to lower your dementia risk.

“Modest decreases in the risk of dementia may be possible by following the same advice given to reduce the risk of heart disease,” Dr. Blacker explains. “Be physically active. Keep your weight and your blood pressure at a healthy level. Eat a healthy diet. Avoid diabetes.” She adds that risk reduction is usually modest at best, and that, unfortunately, many people who follow this advice still develop dementia.

#5 People with dementia don’t know what they want.

“This probably varies a lot with the stage and type of dementia,” Dr. Blacker says. “For progressive dementias like Alzheimer’s and Parkinson’s, when the disease is mild, typically people know what they want and can communicate, unless they have one of the more unusual forms that has an early and prominent impact on language. As the disease progresses, there may indeed be a stage where the desire is clear—especially with something basic—but it’s hard for the person to communicate. Later on, it may be that both are impaired.”

She further suggests that because the expression of needs or wants can vary so greatly among people with dementia, it’s important for caregivers and loved ones to devote some time and effort into deciphering clues and trying to figure out what the person wants. “In particular, when someone (with dementia) becomes agitated, see if the reason could be hunger or some other unmet need,” Dr. Blacker says.

#6 Dementia only gets worse; it can’t be slowed or reversed.

Dr. Blacker notes that in some cases, there are reversible dementia causes and contributors. However, there are also situations in which dementia is the result of a single event, such as a stroke or head injury. In these cases, dementia won’t necessarily progress, but the changes may be permanent.

But because there are several reversible and manageable causes of dementia symptoms, it’s important for anyone showing signs of dementia to get an evaluation.

“Medications, such as over-the-counter sleeping pills that contain diphenhydramine are a big offender,” Dr. Blacker says. “Also, sedatives, some correctable structural brain problems, such as subdural hematoma, alcohol, vitamin deficiencies (especially B12), and metabolic or hormonal abnormalities, such as thyroid deficiency, can also produce dementia symptoms.”

She adds that, with the exception of alcohol and medications, most of those other causes of dementia symptoms are rare, and may only contribute to cognitive loss rather than fully explain it.

#7 Memory lapses in middle or old age mean you have dementia.

“Memory lapses are common in midlife and beyond,” Dr. Blacker says. “Simple things like forgetting the details of a conversation, misplacing keys, or having trouble finding the right word are common, and certainly don’t mean the person has dementia. If such symptoms escalate significantly, particularly later in life, it may be worth consulting your primary care doctor. Dementia, unless it is caused by an acute event like a stroke or head injury, is typically preceded by a period of what’s called ‘mild cognitive impairment,’ where there are clear deficits in cognitive function, but the functional impact is minimal. For example, it’s very hard for the person to remember appointments or medicines, but the person can work around it by keeping careful lists and consulting the calendar, or they need to develop new strategies to avoid forgetting to pay the bills.”

#8 People with dementia are unaware of their symptoms.

“This varies a great deal,” Dr. Blacker says. “Some people are indeed entirely unaware, whether pleasantly not realizing their condition or actively denying any problems at all. Others are painfully aware. Many fall between, where they see something is wrong but tend to minimize it. Overall, awareness tends to be higher when it’s very mild and then begins to wane.

Get the Facts

Because dementia is such an individualized condition, it’s important to remember that dementia facts are seldom absolute. The speed with which a condition progresses varies from person to person. A person with dementia may have days in which he or she seems much more “with it,” while also having many days when cognition and memory are poor at best.

Dispelling some myths now may help when you or someone close to you starts to struggle with this condition.

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