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You’ve probably heard the term dementia before, whether from friends, or the media, or perhaps from doctors, and you may have been uncertain about what it means. Don’t feel bad about it, because you’re not alone. In fact, a fair amount of confusion and misconception surrounds dementia information. The media, and even some in the medical community, have increasingly begun to use the word “dementia” as a euphemism for Alzheimer’s disease. It’s perhaps a less upsetting term than Alzheimer’s precisely because of its vagueness, but that doesn’t mean the two are equivalent. Having Alzheimer’s means having a disease that will cause one kind of dementia, but having dementia doesn’t necessarily mean having Alzheimer’s.

So we’d like to help clarify things for you by explaining how dementia can affect a person, what can cause it, and some of the ways that doctors can treat it once its underlying disease is diagnosed. The following dementia information is organized into four sections which are meant to be read in order because some of the later sections reference dementia information in the earlier sections, but please feel free to skip around if you’ve heard some of it before. The sections are:

1. Dementia: Some Signs and Symptoms to Watch For
2. What Causes Dementia?
3. Diagnosing Dementia: Critical to Effective Treatment
4. The Treatment of Dementia: Medications That Can Help

Please also refer to our caregiving guide Dementia Care At Home for additional information on dementia care.

1. Dementia: Some Signs and Symptoms to Watch For

There was a time when people used to think that forgetfulness and confusion were a normal part of aging, something as inevitable as menopause or reading glasses. However, now that we know that most adults do not normally develop memory loss and should remain alert and able as they age,¹ some new misconceptions have come to replace the old ones. Perhaps one of the most common of these misconceptions is the notion that having memory lapses automatically foreshadows the onset of Alzheimer’s disease. But this is not the case. People become forgetful for any variety of reason, and most of them don’t have anything to do with Alzheimer’s. Nutritional deficiencies, medications, sleep disorders, and emotional disorders like depression all can contribute to or cause memory loss, and these are usually reversible. On the other hand, some memory problems will indicate a far more serious condition, and can mean that the person suffering from it has dementia.

Dementia is a term that describes a constellation of symptoms, and does not specifically refer to a single disease. Rather, dementia is a neurological disorder arising from damage or disease in the brain. It can be caused by any number of diseases or conditions, the most common of which is Alzheimer’s disease. Some of the more common symptoms of dementia include:²

• Short term memory loss. The person with dementia may remember long-ago details like what she wore to her senior prom, but cannot recall what was said to her or what she was doing a few short minutes ago. This is why she might ask you the same question repeatedly—not to be annoying, but because she literally can’t remember asking it or receiving your answer!
• Problems with language usage and comprehension (also known as aphasia). The person with dementia may begin to lose the ability to communicate normally, substituting words that make no sense in the context of what’s being said. Or, he may just forget a simple everyday word that was once used countless times, like “toothbrush” or “fork.” This may happen even if he clearly understands what the word refers to—he just can’t remember the word itself.
• Disorientation. This can take form in three distinct ways. The person may become disoriented to time (confusion with the current date), place (not knowing where she is at any given moment), and/or person (forgetting her own identity). These types of disorientation may be related to episodes of delusion, also a common symptom.
• Delusion, or an unwavering false belief unsupported by reality. This symptom becomes increasingly common as the dementia progresses, although it may not appear at all in the early stages. The hallmark of delusions is that the person suffering from it believes the delusion with absolute conviction and cannot be argued out of it or convinced that it is untrue. Delusions are often difficult to assess because each person’s reality is by nature subjective. However, doctors will often assign the diagnosis if the belief seems patently bizarre or causes significant distress. It may take form as one specific type of delusion, or become a generalized psychosis,³ sometimes accompanied by hallucinations.⁴
• Impaired ability in planning, organizing, and executing complex activities or tasks. “Complex” in this case does not necessarily mean implementing a business plan or writing a doctoral thesis. It refers to anything that employs several, more basic cognitive functions like memory, language, and reasoning to accomplish a task. Cooking a meal, doing mental arithmetic, and driving a car are all examples of things that require a complex coordination of basic functions, and a person with dementia may have significant difficulty performing them.
• Depression. It is unclear whether dementia actually causes elderly depression, but a significant number of people with dementia do have it. Moodiness and apathy are some typical expressions of depression, but other signs are potentially much more serious, such as emotional and physical withdrawal, insomnia, weight loss, or suicidal thoughts. Clinical depression is very different from the normal “having the blues” or “feeling down” experiences that everyone occasionally goes through in life, so the diagnosis must be made by an appropriate health professional.
• Weight loss. Weight loss often occurs before the development of any other dementia symptoms, and scientists have theorized that damage to parts of the brain that control metabolism and appetite may be the cause. To further complicate the issue, people with depression also can lose substantial amounts of weight, so the exact cause may not be clear.
• Behavioral disorders. Although this usually develops after the onset of other symptoms, behavioral changes can occur anytime. A person with dementia may begin to act in sexually inappropriate ways, or become unusually aggressive. (It is important to realize that unusual behavior is different for each individual, since one person’s eccentricities may be another’s “normal” way of doing things.) He may also begin to wander, a behavior linked to disorientation and a real safety concern for caregivers and family.

As dementia progresses in an individual, she may begin having difficulty performing simple tasks such as bathing, dressing, or using the toilet. Personal hygiene will usually suffer as a result. She may demonstrate poor judgment as things become more confusing and disorienting. This may be as harmless as wearing inappropriate clothing for the current weather, but it could become much more serious. The elderly in general, but especially people with dementia, are extremely vulnerable to becoming financially defrauded by unscrupulous individuals looking to take advantage of them. And even without solicitation she may give away or spend large amounts of money without truly understanding what she is doing.

In the advanced stages of dementia, a person will become unable to do even the most basic functions like eating or walking, and may become incontinent. He will become totally dependent on the care of others, and may cease to recognize even close family members. Basic motor functions become severely impaired, and the person becomes completely bedridden.

In order to properly diagnose and treat dementia, you must consult an appropriate medical professional, who will perform numerous clinical tests to try and assess the kind of dementia that you or your loved one may have. It’s not an easy thing to do even for doctors, so worrying about it on your own and relying on your own observations, opinions, and dementia information will only delay treatment. In some cases this delay could become critical to the eventual severity and timeframe that the underlying disease could take. Even in irreversible cases of dementia, there are now several medications and strategies that can help ease and even delay symptoms, greatly improving the patient’s quality of life.

2. What Causes Dementia?

Most people are under the mistaken impression that exhibiting the symptoms of dementia means you have Alzheimer’s disease. But numerous conditions can also cause the symptoms, and some of them are even reversible. These treatable conditions include nutritional issues and dehydration; adverse reactions to certain medications, or interactions between certain drugs; metabolic problems such as hypothyroidism; head injuries; and depression. These are all potentially serious and need to be treated appropriately by a medical professional, and if successfully treated the dementia-like symptoms usually improve.

Brain disease, though, causes the vast majority of dementia cases, and its repercussions are far more serious. The damage from these diseases results in the destruction of brain cells integral to language, reasoning, memory, and emotion, and produces the symptoms of dementia (please see above). Most dementia cases come from four different conditions, each with its own unique issues:

• Alzheimer’s disease (AD). This is the most common type, accounting for up to 2/3rds of all cases, and the precise cause is unknown. Clumps and tangles of proteins develop among brain cells, interfering with their functioning and eventually destroying them. This usually begins in the memory and reasoning centers of the brain and then eventually progresses to include the entire cerebral cortex (the “thinking” part of the brain). At present, this type of dementia is irreversible.
• Lewy body dementia (LBD). Lewy bodies are round protein structures that develop among brain cells, displacing them and disrupting their functioning. The precise cause of why they develop is unknown.⁵ Depending upon whom you ask, LBD is increasingly considered the second leading cause of dementia, from 20% to 35% of all cases, but it is still considered a very new, relatively unknown classification.
• Vascular dementia, also known as multi infarct dementia. Brain damage from narrowed or blocked arteries causes this condition, usually as a result of stroke. Although the damage is irreversible, proper treatment of the underlying disease which caused the stroke (such as high blood pressure) can halt the further progression of vascular dementia. The symptoms of this dementia will vary according to which parts of the brain were affected by the stroke. Vascular dementia was once considered the second leading cause of dementia, but has now been overtaken by LBD.
• Frontotemporal dementia. In this form of dementia the brain’s frontal lobes gradually degenerate, affecting a person’s judgment and social behavior and appearing to change his personality. While the disease is only a distant fourth in prevalence of overall dementia cases, it is the second leading cause of dementia in people who are younger than the age of 65.

There are several other brain disorders that cause dementia, though with much less frequency than those listed above. These include Huntington’s disease (a genetic disorder characterized by abnormal jerky body movements), Parkinson’s disease (characterized by limb stiffness and stooped posture, tremor, speech impairment, and a shuffling gait), and Creutzfeldt-Jakob disease (a transmissible disease of which the human form of mad cow disease is the latest example). In addition, some infections (such as meningitis, syphilis, and even AIDS) have been known to cause dementia.

3. Diagnosing Dementia: Critical to Effective Treatment

The important thing to remember about diagnosing dementia is that no one single test can solely and conclusively establish whether a person has it or not. Rather, doctors rely on numerous tests, surveys, and interviews to try and eliminate other possible contributing factors and find out what’s really wrong. This is why it’s so important to see a specialist who is trained in identifying the symptoms, such as a geriatric care internist, a geriatric psychiatrist, or a neurologist. However, even your family doctor should know of some brief evaluations that can help determine whether you or your loved one needs more extensive examination.

Depending on which kind of specialist you go to, the number and type of tests can vary quite a bit. Currently, there is no set standard of assessment for dementia among all medical professionals. You will find, for example, that neurologists may recommend one set of procedures, while psychiatrists follow their own diagnostic protocols. And certain research and health organizations such as the Alzheimer’s Association advocate yet another standard. They all have certain tests in common, such as the Mini-Mental State Examination (MMSE), but they differ substantially on recommending other methods, such as extensive neuropsychological testing⁶ and certain types of brain imaging.

The whole process of undergoing all these tests and interviews can provoke a lot of anxiety among patients and their families, and it’s perfectly understandable. For families, the initial testing phase makes for one of the most emotionally vulnerable periods during an illness, as they wait to find out what’s wrong with their loved one. In the case of dementia, the anxiety can be especially heightened because the examining doctor must actively involve the family in order to arrive at a proper diagnosis. The patient is not always fully aware of the potential cognitive problems she is experiencing, so doctors must rely at least in part on her family’s observations to complete the clinical picture.

The doctors will need to ask probing questions about virtually every aspect of the patient’s health, behavior, and life circumstances. They will take several assessments of mental acuity, memory, and alertness, and will conduct a physical and neurological exam. Because medications are a very common cause of cognitive impairment, the patient will need to stop taking any drugs that may be contributing to the suspected dementia for a period of several weeks, after which the mental status examinations are repeated. And depending on the type of specialist being consulted (as mentioned above), neuropsychological tests may be run, certain brain scans may be used, and certain lab tests may be ordered.

Finally, one of the key complications in the diagnosis and treatment of dementia is the presence of depression. In many cases, what appear to be signs of dementia to the family are actually the effects of depression. Doctors call this the “dementia of depression,” or sometimes pseudodementia, and treating the depression will usually greatly improve or reverse the dementia-like symptoms. But it’s not always so straightforward, because depression can also be a symptom of true dementia. Trying to determine what causes what can be extremely difficult, but remains crucial to the eventual diagnosis and treatment. And so doctors will attempt to assess mood and emotional state with some tests and observations, as well as interviews with family members.

4. The Treatment of Dementia: Medications and Dementia Care

The treatment of dementia depends entirely on the nature of the underlying cause and whether it is considered reversible or not. (Please refer to the section above titled What Causes Dementia? for more information) In general, the reversible causes of dementia, such as vitamin deficiency or metabolic disorders, can be treated very successfully with straightforward methods. For example, doctors can halt and reverse the dementia effects of hypothyroidism by prescribing the appropriate thyroid hormone; depression can now be managed very effectively by combining psychotherapy with antidepressant medications; and if certain medications were causing side effects of dementia, simply stopping usage of the offending drugs will resolve the dementia. (In some cases the medication dosage will need to be adjusted rather than abandoning the regimen entirely, depending on what was being originally treated and how critical the medication is to the patient’s health. Remember, only the doctor(s) involved can make this determination.) However, because most dementia cases are irreversible, treatment will usually involve medications to ease the symptoms and the creation of a safe and supportive environment to help the patient function as well as he can for as long as possible. (For additional information on dementia care at home, please read our companion article Dementia Care At Home.)

There are currently five prescription drugs that have been developed for Alzheimer’s disease (AD) that can delay and slow the progression of dementia in patients with AD. Four of these drugs are called cholinesterase inhibitors, and are usually known by their brand names Aricept^®, Exelon^®, Razadyne^® (formerly known as Reminyl^®), and Cognex^® (no longer actively marketed).⁷ They work by preventing the breakdown of a brain chemical called acetylcholine, and are usually only effective in mild to moderate cases of dementia. Because these will only work for a limited time to delay symptoms, it is important to start treatment as early as possible for maximum effect, which is why early diagnosis is so critical.

There is also a fifth drug, Namenda^®, which is used to treat moderate to severe cases of dementia and works by an entirely different mechanism. It regulates another brain chemical called glutamate and helps to prevent cell death, but as in the other four drugs it can only delay the progression of the dementia and cannot “cure” it. Namenda^® may be used in conjunction with any of the four cholinesterase inhibitors.

While these medications were developed and approved for use in patients with AD, they have been found to be very helpful in patients with Lewy Body Dementia (LBD) and, to a lesser extent, patients with vascular dementia.

One of the most important things that doctors will usually do first in dementia care is to treat any associated depression with appropriate medications and psychotherapy. Even if the dementia is not “caused” by an underlying depression (pseudodementia), treating the depression can greatly improve the patient’s overall condition and quality of life.

Sleep disorders can be treated with the appropriate medications as well, although shorter acting sedatives in lower doses are usually preferred. These sedatives can also be used to treat anxiety if necessary.

The attending physician may also recommend treating any associated psychosis or behavioral agitation with antipsychotic medications if those symptoms are present. These drugs have been found to be somewhat effective in reducing hallucinations and behavioral problems, but they have not been approved for use in dementia patients by the FDA and their use is considered very controversial. In fact, the FDA has issued a warning (April, 2005) regarding “atypical” (second generation) antipsychotics in dementia patients. The warning states “that older patients treated with atypical antipsychotics for dementia had a higher chance for death than patients who did not take the medicine.” Because this warning does not actually prevent doctors from legally prescribing these medications for this type of “off-label” use, it is extremely important that families understand the potential risks involved and proceed with caution.

Medications can become even more unpredictable when it comes to Lewy Body Dementia:

Each year, advances in research science and biomedical technology continue to shed new light on the underlying nature of the brain diseases that cause dementia. And with these new discoveries come renewed hope that scientists will someday soon develop an effective cure or preventive for the millions who suffer from it. But while progress has been rapid, it is not always steady, tidy, nor linear, so it’s extremely difficult, if not impossible, for the average person to keep up with the latest dementia information. That’s why it’s so important to consult with a qualified physician (such as a geriatric internist, a geriatric psychiatrist, or a neurologist) who is informed of the most recent advances in diagnosis and treatment. Talk to your doctor about the options, resources, and dementia information available to you in your area—she or he may be just the right person who can help you, or may be able to refer you to a specialist who can. If you suspect that you or someone you love may have dementia, don’t wait to act—the sooner you find out what’s wrong, the sooner you or your loved one can be helped.

¹ Some slowing of memory recall as we grow older is considered normal.

² Not all patients with dementia will have all of these symptoms. The exact nature of the symptoms will depend on what is actually causing the dementia, and can only be diagnosed by a qualified physician.

³ Psychosis is a psychological term that refers to a mental state in which perception and thought processes become severely distorted, affecting behavior, personality, and self awareness.

⁴ Vivid hallucinations are very common in a type of dementia known as Lewy Body Dementia. Please refer to the sections below titled What Causes Dementia? and The Treatment of Dementia: Medications That Can Help for more Lewy Body Dementia information.

⁵ What we do know is that Lewy bodies are also present in Parkinson’s disease (PD), and patients who have LBD often show some of the symptoms of PD, such as the stooped posture and shuffling gait. The primary difference is that in PD, the Lewy bodies form only in the midbrain (a part of the brain beneath the cerebral cortex associated with motor control and attention), whereas in LBD the Lewy bodies occur in both the brainstem and the cerebral cortex. In addition to some of the classic dementia symptoms of cognitive impairment described above, patients with LBD will usually also have persistent fluctuations in attention and alertness, visual hallucinations, and some of the motor functioning problems similar to PD.
To further complicate things, LBD and Alzheimer’s disease often coexist in the same patient, making proper diagnosis extremely difficult. Fortunately, Lewy Body Dementia information has rapidly increased over the last decade, and doctors are beginning to learn to read some of the signs and symptoms of this dementia and adjust their treatment accordingly.

⁶ Neuropsychological tests measure mental functions associated with specific parts of the brain. While the MMSE is considered one of these, doctors disagree on whether extensive testing is necessary. Perhaps the most well known neuropsychological tests are the ones that measure intelligence: the Stanford-Binet IQ test and the Wechsler Adult Intelligence Scale.

⁷ All pharmaceutical brand names mentioned in this article are registered trademarks of their respective manufacturers. Their usage here is for informational purposes only and does not imply any endorsement or promotion by A Place For Mom, Inc.

⁸ The most effective formulations of levodopa contain carbidopa, and are marketed under several brand names such as Sinemet®, Atamet®, Larodopa®, Lodosyn®, and Stalevo®.