Introduction

Dementia is a disorder that gradually robs people of their ability to remember, think, understand, communicate, and control behavior (mental function).

There are many types of dementia, including Alzheimer's disease. Different types affect different mental abilities and progress at different rates. Therein lies the anguish of dementia: Dementia progresses. It cannot be cured. At some point, people with dementia need complete care. Eventually, dementia results in death.

Dementia may develop at any age but is much more common among older people. About 6 to 8% of people over 65 have dementia. And the older people become, the more common dementia becomes. About 35% of people 85 or over have dementia. Nonetheless, dementia is not an inevitable part of aging. Many people over 100 do not have dementia.

When older people start forgetting or misplacing things more often, they may worry that this forgetfulness is the first sign of dementia, particularly Alzheimer's disease. This forgetfulness is not always dementia, but in about half of these people, dementia sooner or later becomes apparent.

Types and Causes

The most common type of dementia is Alzheimer's disease. Other common types are vascular (multi-infarct) dementia, which is caused by strokes, and Lewy body dementia. Many people have more than one of these dementias (mixed dementia). Several less common types of dementia result from another brain disorder (such as Parkinson's disease or a tumor) or from normal-pressure hydrocephalus.

In some types of dementia (such as Alzheimer's disease), the level of acetylcholine in the brain is low. Acetylcholine is a chemical messenger (called a neurotransmitter) that helps nerve cells communicate with one another. Acetylcholine helps with memory, learning, and concentration and helps control the functioning of many organs. Other changes occur in the brain, but whether they cause or result from dementia is unclear.

Certain disorders, if inadequately treated, can make dementia worse. Examples are diabetes, chronic obstructive pulmonary disease (COPD), and heart failure. Many people improve substantially when these disorders are treated.

Many drugs may temporarily cause or worsen the symptoms of dementia. Common offenders include drugs used to promote sleep (sleep aids or sedatives), cold remedies, and some drugs used to treat anxiety and depression. Some of these drugs can be purchased without a prescription (over-the-counter). Drinking alcohol, even in moderate amounts, may also make dementia worse.

Some disorders (such as delirium) cause symptoms that resemble those of dementia. These disorders are not considered dementia because treatment can restore all or part of mental function.

Symptoms

Symptoms of most dementias are similar. But different symptoms occur first, and each type of dementia progresses in a different way. Generally, dementia causes the following:

• Memory loss
• Problems using language
• Changes in personality
• Disorientation
• Problems doing usual daily activities
• Disruptive or inappropriate behavior

Some people with dementia also have psychotic symptoms, such as hallucinations, delusions, or paranoia.

Memory loss often begins with forgetting recent events. People with dementia may ask the same questions over and over and constantly forget where they put things. They may forget entire events. Important tasks may be forgotten or done incorrectly. For example, people may forget to pay a bill, pay it several times, send the wrong amount, or forget to sign the check. Forgetting may frustrate them. Learning and remembering new information is also difficult.

Early in dementia, using language becomes more difficult. People with dementia may use words incorrectly or be unable to find the right word. They may use a general word or many words rather than the specific word. For example, "that thing around the collar" may be used for "necktie." Using numbers (for example, adding and subtracting) and handling money become more difficult.

Personality may change markedly. People with dementia may become depressed, fearful, anxious, or emotionally unresponsive. A particular personality trait may become more and more extreme. People who were always concerned with money become obsessed with it. Emotions may change unpredictably and rapidly. People may be euphorically happy one moment and, without any reason, become inconsolably sad the next. If changes in their personality or mental function are mentioned, people with dementia may become irritable, hostile, or agitated.

People with dementia may misinterpret what they see and hear and become disoriented easily. Disorientation can interfere with doing daily activities. However, some people hide their deficiencies well. They follow established routines at home and avoid activities that have become difficult for them. Early in dementia, people may be able to continue driving, but they become confused in congested traffic or get lost more easily. As dementia progresses, making the quick decisions and coordinating the many manual skills needed in driving become more and more difficult. People may not remember where they are going. They may be unable to make sense of what they see and hear.

As the dementia progresses, people may act disruptively and become less and less able to control their behavior. They may yell, throw, hit, wander, or act in socially inappropriate ways. They may become physically aggressive and more easily agitated. Usually, people with dementia act this way because they have difficulty communicating. Behavior is used to express feelings or needs that they cannot describe in words. They may wander because they are hungry or frightened, because they need to use the toilet, or because they are looking for something or someone. They may yell continuously because they are in pain.

Disruptive behavior may also result from being disoriented. People with dementia have difficulty understanding what they see and hear, so they may misinterpret an offer of help as a threat and lash out. For example, when someone tries to help them undress, they may interpret it as an attack and try to protect themselves, sometimes by hitting. Because their short-term memory is impaired, they cannot keep track of what is happening to and around them. They may repeatedly demand things (such as meals) that they have already received and become agitated and upset when they do not get them.

People with dementia may act in socially inappropriate ways because they have forgotten how to behave appropriately. When hot, they may undress in public. When they have sexual impulses, they may masturbate in public, use off-color or lewd language, or make sexual demands, sometimes aggressively.

Sleep problems are common. Most people with dementia sleep an appropriate amount, but they spend less time in deep sleep. As a result, they may become restless at night. Problems falling or staying asleep are common. If people do not exercise enough or do not participate in many activities, they may sleep too much during the day. Then they do not sleep well at night. When people with dementia cannot sleep, they may wander, yell, or call out.

Depression and anxiety are common and are understandable reactions to developing dementia. But they may be hard to recognize because people with dementia may not be able to express their feelings. Depression may be expressed by a sad facial expression, crying episodes, loss of interest, apathy, withdrawal, loss of appetite and weight, problems sleeping, or complaints about physical pain. People with dementia may become nervous or worried about making mistakes or forgetting things. Anxiety may become worse when people are separated from their caregivers or their schedules are changed.

Symptoms, including sleep problems and disruptive behavior, may worsen when people with dementia are moved to a nursing home or another institution. They may even try to return home. Symptoms worsen partly because adjusting to changes and remembering new routines are difficult. Symptoms may also worsen when physical problems, such as pain, shortness of breath, retention of urine, and constipation, develop. These problems may cause delirium with rapidly worsening confusion. If the problem is corrected, people may eventually return to the level of functioning they had before the problem.

As dementia progresses, people may need help with eating, dressing, bathing, or going to the toilet. They may not be able to recognize people, places, and things. People with dementia may not even recognize their own face in a mirror. When they see themselves in a mirror, they may think strangers are in the house—a thought that frightens and upsets them. Their increasing confusion and disorientation makes falling more likely. For example, they may not step high or soon enough to clear an obstacle in their path. Many of them become incontinent.

Eventually, memory is completely lost. When dementia is advanced, people cannot follow conversations or recognize close family members.

Advanced dementia may interfere with the control of muscles. Movements may become slow and less coordinated, and muscles may become weak. Speaking may become impossible. Swallowing may be difficult, and choking may occur, leading to undernutrition and dehydration. Walking or getting out of bed may be very difficult, even with help. As a result, pressure sores and infections, such as pneumonia, are more likely to develop. People with advanced dementia may have seizures.

People with dementia become totally dependent on others. Some people become totally unresponsive. Usually, death results from an infection, such as pneumonia, rather than from dementia itself.

Diagnosis

Family members or doctors may first suspect dementia when a person becomes unusually forgetful. Doctors or other health care practitioners can usually diagnose dementia by asking the person and family members questions.

Typically, the person is given a mental status test. This test consists of questions and tasks, such as naming objects, recalling short lists, writing sentences, and copying shapes. Sometimes more detailed testing (called neuropsychologic testing) is needed, usually when the diagnosis is still unclear. This testing is similar but covers more areas of mental function: learning, memory, problem-solving, abstract reasoning, orientation in time and space, attention, language, behavior, and mood. Neuropsychologic testing usually takes 1 to 3 hours. When evaluating the results of testing, doctors consider the person's age and educational level.

Family members are asked when the symptoms started, how symptoms developed, and how the person has changed—for example, has the person given up hobbies or stopped doing usual activities. Questions include what drugs the person is taking because a drug may be contributing to the dementia. Questions are asked about the person's emotional health because depression could be causing the symptoms or making them worse.

The diagnosis of dementia is based mainly on symptoms and the results of mental status testing. Dementia is diagnosed only if memory and at least one other area of mental function are impaired enough to affect daily activities.

Doctors usually perform a physical examination and order tests to check for disorders that may be causing the dementia or making it worse. For example, blood and urine tests are done to check for infections, vitamin deficiencies, and diabetes. If the symptoms or results of the physical examination suggest that the cause is a brain tumor, normal-pressure hydrocephalus, or a stroke, computed tomography (CT) or magnetic resonance imaging (MRI) may be done. However, the cause of the dementia can be confirmed definitively only when a sample of brain tissue is removed and examined under a microscope. This procedure is rarely done until after death (during an autopsy).

Treatment

For most people with dementia, no treatment can restore mental function. Correcting conditions that may contribute to dementia and providing a supportive environment can sometimes help slow the mental decline and maintain the person's quality of life. Certain drugs sometimes help. The person with dementia, family members, other caregivers, and the health care practitioners involved should discuss these measures and decide which measures seem most appropriate.

Correcting conditions that may contribute to dementia: Treating disorders that are contributing to dementia sometimes slows mental decline. For people who have dementia and depression, antidepressants and counseling may help, at least temporarily. Abstaining from alcohol can result in long-term improvement. Drugs that may be making the dementia worse are discontinued if possible.

Providing a supportive environment: People with dementia benefit from an environment that is familiar, safe, and stable. But it should not be boring. Some stimulation is important. The environment should also be designed to help with orientation. For example, windows enable people to know generally what time of day it is.

Usually at first, people with dementia function best in a familiar environment and can remain at home. Moving to a new home, rearranging furniture, or even repainting rooms can be disruptive and cause symptoms to worsen.

Extra safety measures are usually needed. Homes can be evaluated for safety by a home health agency, which can suggest needed changes. For example, lighting should be relatively bright. In dim light, people with dementia are more likely to misinterpret what they see, become disoriented, and possibly fall. Leaving a night-light on or installing motion sensor lights may also help. Items that could be dangerous (such as guns, drugs, bleach, paint, and sharp knives) should be kept in locked cabinets.

Certain measures help people do daily activities safely. For example, safety reminders (such as "remember to turn the stove off") can be posted, or timers can be installed on stoves or electrical equipment. Placing detectors on doors may help prevent people from wandering and having accidents. If wandering is a problem, an identification bracelet or necklace is essential.

At some point, people with dementia can no longer drive safely. Some people decide on their own to stop driving. But others need to be persuaded or convinced. Health care practitioners may be able to help. Sometimes measures, such as removing the car keys or the car, must be taken to prevent people with dementia from continuing to drive.

Following a daily routine for such activities as bathing, eating, and sleeping helps people with dementia remember. A routine also gives them a sense of security and stability. The routine should be as simple and stress-free as possible. However, the routine should include pleasurable and useful activities, such as listening to music, walking, folding laundry, making the bed, and interacting with other people. Such activities can help people feel independent and needed, enhancing self-esteem. Mental activities can help keep people alert and interested in life and help relieve depression. Physical activities and exercise help relieve stress and frustration. Physically active people are less likely to become agitated, to wander, and to have problems sleeping.

Activities related to the person's interests before dementia began are good choices. Activities should provide some stimulation but should not involve too many choices or challenges. Short activities are best. They should be enjoyable and not be used as tests of mental function. Activities should be modified as the dementia worsens. People with dementia can continue to do familiar activities when caregivers divide the activity into small, simple parts.

Measures that help orient people include a daily calendar, a clock with numbers that are easy to read, and good lighting. Also, family members or caregivers can make frequent comments that remind people with dementia of where they are and what is going on.

Providing a supportive environment at home for a demented person may involve getting extra help. Family members can get a list of available services from health care practitioners, social or human services (listed in the telephone book), or the Internet (through Eldercare Locator). Services may include housekeeping, respite care, meals brought to the home, and daycare programs and activities designed for people with dementia. Around-the-clock care can be arranged but is expensive.

Because dementia is progressive, people with dementia may not be able to remain at home indefinitely. Long before a person with dementia needs to be moved to a more supportive and structured environment, family members should plan for this move and evaluate the options for long-term care. Deciding when the move is necessary is difficult. Family members may want to maintain the person's sense of independence and keep the person in a familiar environment as long as possible. When making decisions about long-term care, family members must consider many factors, including the severity of the person's symptoms, the home environment, the availability of family members and caregivers, financial resources, and the presence of other disorders and needs. Doctors, social workers, nurses, and lawyers can help with these decisions.

Some long-term care facilities, including assisted living facilities and nursing homes, specialize in caring for people with dementia. Staff members are trained to understand how people with dementia think and act and how to respond to them. Staff members get to know the residents and their needs. These facilities have routines that make the residents feel secure and provide appropriate activities that help them feel productive and involved in life. Most facilities have safety features appropriate for people with dementia. For example, signs are posted to help residents find their way, and certain doors have locks or alarms to prevent residents from wandering.

Some people with dementia worsen when they are moved from their home to a long-term care facility. However, after a short time, most people adjust and function better in the more supportive environment.

Slowing the progression of dementia: A group of drugs called cholinesterase inhibitors (such as donepezil, galantamine, and rivastigmine) may stabilize or improve mental function. They may slow the progression of dementia, but they cannot stop it. These drugs were developed to treat Alzheimer's disease but may be useful for other dementias. Cholinesterase inhibitors prevent acetylcholine (which helps nerve cells communicate) from breaking down. As a result, the level of acetylcholine in the brain increases. Cholinesterase inhibitors are most useful early in dementia. Their effectiveness varies considerably from person to person. About one third of people do not benefit. About one third improve slightly for a few months. The rest improve considerably for a longer time, but the dementia eventually progresses. If one cholinesterase inhibitor is ineffective or has side effects, another should be tried. If the ones tried are ineffective or have side effects, they should be discontinued. The most common side effects include nausea, vomiting, weight loss, and abdominal pain or cramps. Tacrine, the first cholinesterase inhibitor developed for treating dementia, is rarely used anymore because of its side effects. Donepezil, galantamine, and rivastigmine are less likely to have side effects.

A new drug called memantine is being studied. It slows the progression of dementia, but it cannot stop it. Memantine works differently from cholinesterase inhibitors and may be used with them. The combination may be more effective than a cholinesterase inhibitor alone.

Ergoloid mesylates, such as dihydroergotoxine, used to be given to prevent mental function from declining. However, they do not help.

An extract of ginkgo biloba (called EGb) is a dietary supplement claimed to enhance memory. Ginkgo has stabilized or improved mental and social function in some people with dementia in its early stages. However, studies of ginkgo have had inconsistent results, and high doses may have side effects. Other dietary supplements have been tried but have generally proved of little value in treating dementia. They include acetyl-L carnitine, choline, and lecithin.

Certain vitamins are also sometimes prescribed for dementia. In one large study, use of vitamin E, an antioxidant, resulted in modest improvements in mental function. Vitamin C and folic acid are sometimes used, but the evidence of their benefit is less conclusive.

Managing symptoms: Agitation or disruptive behavior is best managed by understanding how people with dementia view the world and modifying their environment accordingly. For example, when being given a bath, a person with dementia may not understand what is being done and may feel under attack. Taking time to explain exactly what is being done can help prevent a fight. Caregivers can learn how to respond to disruptive behavior and thus calm the person more quickly and sometimes prevent the behavior. Such information can be obtained from health care practitioners, health organizations, the Internet, and support groups.

Drugs are usually not the best way to manage disruptive behavior. But drugs are often used to reduce the agitation and outbursts that may accompany advanced dementia. They are also sometimes used when efforts to calm and reassure (including changes in the environment) do not prevent unwanted behavior. These drugs include those used to prevent seizures (anticonvulsants, such as valproate) and those used to treat loss of contact with reality (antipsychotic drugs). Antipsychotic drugs are most effective in people who have hallucinations, delusions, or paranoia in addition to agitation. Antipsychotic drugs often cause serious side effects, such as drowsiness, shakiness, and falls. They can also worsen confusion. If antipsychotic drugs are used, family members should talk with the doctor about whether the drugs are really helping. Family members may also ask whether newer antipsychotic drugs (such as olanzapine and quetiapine) are being used. These drugs are as effective as older antipsychotic drugs (such as haloperidol or thioridazine) but have fewer side effects. Cholinesterase inhibitors, used to improve mental function and slow the progression of dementia, may also help control disruptive behavior.

For people who have problems sleeping, changes in daily routines can often help. For example, people should be encouraged and helped to exercise regularly and to participate in more activities. Thus, they may sleep less during the day and more at night. Following a regular routine at bedtime may also help. Foods and beverages that contain caffeine should not be consumed late in the day.

If changes in daily routines are ineffective, doctors may consider using a drug to promote sleep (a sleep aid or a sedative). Any of these drugs can impair mental function, make a person more confused, and increase the risk of falling and fractures. So if used, these drugs are given in low doses and discontinued as soon as possible. For older people, some sedatives, such as trazodone (also an antidepressant), may be safer than others. Benzodiazepines (such as flurazepam and temazepam), a type of sedative, are usually not a good choice. Benzodiazepines are more likely than other types of sedatives to impair mental function, cause sleepiness the next day, and lead to falls.

Treating pain and other unrelated disorders may also help. However, health care practitioners may have difficulty identifying pain or other disorders because people with dementia may not be able to report symptoms. An abrupt change in behavior, such as increased agitation, may indicate development of pain or a disorder, such as a urinary tract infection or constipation, and should be reported to a health care practitioner.

End-of-life issues: Before dementia becomes severe, decisions should be made about medical care and finances. People with dementia, if able, should appoint a health care proxy, who is legally authorized to make treatment decisions on their behalf. They should discuss their health care wishes with their proxy and doctor, then decide on and write down advance directives. For example, while still able, people with dementia should decide whether they want artificial feeding or antibiotics to treat infections (such as pneumonia) when dementia is very advanced.

As dementia worsens, treatment tends to be directed at comfort rather than at attempts to prolong life. Often, aggressive treatments, such as artificial feeding, increase discomfort. In contrast, less drastic treatments can relieve discomfort. These treatments include adequate control of pain, skin care (to prevent pressure sores), and attentive nursing care. Nursing care is most helpful when it is provided by one caregiver (or a few) who develops a consistent relationship with the person. A comforting, reassuring voice and soothing music may also help.

See the sidebar Is It Dementia?

See the sidebar Less Common Causes of Dementia.