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Dementia Overview


Dementia Overview

Dementia is a decline of reasoning, memory, and other mental abilities (the cognitive functions). This decline eventually impairs the ability to carry out everyday activities such as driving; household chores; and even personal care such as bathing, dressing, and feeding (often called activities of daily living, or ADLs).

  • Dementia is most common in elderly people; it used to be called senility and was considered a normal part of aging. 


  • We now know that dementia is not a normal part of aging but is caused by a number of underlying medical conditions that can occur in both elderly and younger persons. 


  • In some cases, dementia can be reversed with proper medical treatment. In others, it is permanent and usually gets worse over time.
About 4-5 million people in the United States have some degree of dementia, and that number will increase over the next few decades with the aging of the population.
  • Dementia affects about 1% of people aged 60-64 years and as many as 30-50% of people older than 85 years.


  • It is the leading reason for placing elderly people in institutions such as nursing homes.
Dementia is a very serious condition that results in significant financial and human costs.
  • Many people with dementia eventually become totally dependent on others for their care. 


  • Although people with dementia typically remain fully conscious, the loss of short- and long-term memory are universal.


  • People with dementia also experience declines in any or all areas of intellectual functioning, for example, use of language and numbers; awareness of what is going on around him or her; judgment; and the ability to reason, solve problems, and think abstractly.


  • These losses not only impair a person’s ability to function independently, but also have a negative impact on quality of life and relationships.
Many older people fear that they are developing dementia because they cannot find their glasses or remember someone’s name.
  • These very common problems are most often due to a much less serious condition involving slowing of mental processes with age. 


  • Medical professionals call this “benign senescent forgetfulness,” or “age-related memory loss.”  


  • Although this condition is a nuisance, it does not impair a person’s ability to learn new information, solve problems, or carry out everyday activities, as dementia does.


Dementia Causes

Dementia has many different causes, some of which are difficult to tell apart. Many medical conditions can cause dementia symptoms, especially in older people.

  • The causes of dementia include various diseases and infections, strokes, head injuries, drugs, and nutritional deficiencies. 


  • All dementias reflect dysfunction in the cerebral cortex, or brain tissue. Some disease processes damage the cortex directly; others disrupt subcortical areas that normally regulate the function of the cortex.


  • When the underlying process does not permanently damage the cortical tissue, the dementia may sometimes be stopped or reversed.


  • In classifying dementias, medical professionals may either separate cortical or subcortical dementias or divide reversible and irreversible dementias.
Irreversible causes

The main irreversible causes of dementia are described here. These damage brain cells in both cortical and subcortical areas. Treatment focuses on slowing progress of the underlying condition and relieving symptoms.

  • Alzheimer disease: This is the most common cause of dementia, accounting for about half of all cases. Alzheimer disease is at least partly hereditary in that it tends to run in families. (Just because a relative has Alzheimer disease, however, does not mean that another family member will have the disease.) In this disease, abnormal protein deposits in the brain destroy cells in the areas of the brain that control memory and mental functions. People with Alzheimer disease also have lower-than-normal levels of brain chemicals called neurotransmitters that control important brain functions. Alzheimer disease is not reversible, and no known cure exists. However, certain medications can slow its progress.


  • Vascular dementia: This is the second most common cause of dementia, accounting for as many as 40% of cases. This dementia is caused by atherosclerosis, or “hardening of the arteries,” in the brain. Deposits of fats, dead cells, and other debris form on the inside of arteries, partially (or completely) blocking blood flow. These blockages cause multiple strokes, or interruptions of blood flow, to the brain. Because this interruption of blood flow is also called “infarction,” this type of dementia is sometimes called multi-infarct dementia. One subtype whose origin is not well understood is Binswanger disease. Vascular dementia is related to high blood pressure, high cholesterol, heart disease, diabetes, and related conditions. Treating those conditions can slow the progress of vascular dementia, but functions do not come back once they are lost.  


  • Parkinson disease: People with this disease typically have limb stiffness (which causes them to shuffle when they walk), speech problems, and tremor (shaking at rest). Dementia may develop late in the disease, but not everyone with Parkinson disease has dementia. Reasoning, memory, speech, and judgment are most likely to be affected. 


  • Lewy body dementia: This is caused by abnormal microscopic deposits of protein, called Lewy bodies, which destroy nerve cells. These deposits can cause symptoms typical of Parkinson disease, such as tremor and muscle rigidity, as well as dementia similar to that of Alzheimer disease. Lewy body dementia affects thinking, attention, and concentration more than memory and language. Like Alzheimer disease, Lewy body dementia is not reversible and has no known cure. The drugs used to treat Alzheimer disease also benefit some people with Lewy body disease.  


  • Huntington disease: This inherited disease causes wasting of certain types of brain cells that control movement as well as thinking. Dementia is common and occurs in the late stages of the disease. Personality changes are typical. Reasoning, memory, speech, and judgment may also be affected. 


  • Creutzfeldt-Jakob disease: This rare disease occurs most often in young and middle-aged adults. Infectious agents called prions invade and kill brain cells, leading to behavior changes and memory loss. The disease progresses rapidly and is fatal.  


  • Pick disease (frontotemporal dementia): This is another rare disorder that damages cells in the front part of the brain. Behavior and personality changes usually precede memory loss and language problems.  


  • Parkinson disease and Huntington disease begin in subcortical areas. They cause the subcortical type of dementia.
Treatable conditions

The dementia in these conditions may be reversible or partially reversible, even if the underlying disease or damage is not.

  • Head injury: This refers to brain damage from accidents, such as motor vehicle wrecks and falls; from assaults, such as gunshot wounds or beatings; or from activities such as boxing without protective gear. The resulting damage of brain cells can lead to dementia. 


  • Infections: Infections of brain structures, such as meningitis and encephalitis, are primary causes of dementia. Other infections, such as HIV/AIDS and syphilis, can affect the brain in later stages. In all cases, inflammation in the brain damages cells.  


  • Normal pressure hydrocephalus: The brain floats in a clear fluid called cerebrospinal fluid. This fluid also fills internal spaces in the brain called cerebral ventricles. If too much fluid collects outside the brain, it causes hydrocephalus. This condition raises the fluid pressure inside the skull and compresses brain tissue from outside. It may cause severe damage and death. If fluid builds up in the ventricles, the fluid pressure remains normal (“normal pressure hydrocephalus”), but brain tissue is compressed from within. 


  • Simple hydrocephalus: Simple hydrocephalus may cause typical dementia symptoms or lead to coma. In normal pressure hydrocephalus, people have trouble walking and become incontinent (unable to control urination) at the same time they start to lose mental functions, such as memory. If normal pressure hydrocephalus is diagnosed early, the internal fluid pressure may be lowerable by putting in a shunt. This can stop the dementia, the gait problems, and the incontinence from getting worse.


  • Brain tumors: Tumors can cause dementia symptoms in a number of ways. A tumor can press on structures such as the hypothalamus or pituitary gland, which control hormone secretion. They can also press directly on brain cells, damaging them. Treating the tumor, either medically or surgically, can reverse the symptoms in some cases. 


  • Toxic exposure: People who work around solvents or heavy metal dust and fumes (lead especially) without adequate protective equipment may develop dementia from the damage these substances can cause to brain cells. Some exposures can be treated, and avoiding further exposure can prevent further damage. 


  • Metabolic disorders: Diseases of the liver, pancreas or kidneys can lead to dementia by disrupting the balances of salts and other chemicals in the blood. Often, these changes occur rapidly and affect the person’s level of consciousness. This is called delirium. Although the person with delirium, like the person with dementia, cannot think well or remember, treatment of the underlying disease may fully reverse the condition. If the underlying disease persists, however, brain cells may die, and the person will have dementia. 


  • Hormone disorders: Disorders of hormone-secreting and hormone-regulating organs such as the thyroid gland, the parathyroid glands, the pituitary gland, or the adrenal glands can lead to hormone imbalances, which can cause dementia if not corrected. 


  • Poor oxygenation (hypoxia): People who do not have enough oxygen in their blood may develop dementia because the blood brings oxygen to the brain cells, and brains cells need oxygen to live. The most common causes of hypoxia are lung diseases such as emphysema or pneumonia. These limit oxygen intake or transfer of oxygen from the airways of the lungs to the blood. Cigarette smoking is a frequent cause of emphysema. It can worsen hypoxic brain damage by damaging the lungs and also by increasing the levels of carobon monoxide in the blood. Heart disease leading to congestive heart failure may also lower the amount of oxygen in the blood. Sudden, severe hypoxia may also cause brain damage and symptoms of dementia. Sudden hypoxia may occur if someone is comatose or has to be resuscitated.


  • Drug reactions, overuse, or abuse: Some drugs can cause temporary problems with memory and concentration as side effects in elderly people. Misuse of prescription drugs over time, whether intentional or accidental, can cause dementia. The most common culprits are sleeping pills and tranquilizers. Other drugs that cause dry mouth, constipation, and sedation (“anticholinergic side effects”) may cause dementia or dementia symptoms. Illegal drugs, especially cocaine (which affects circulation and may cause small strokes) and heroin (which is very anticholinergic) may also cause dementia, especially in high doses, if taken for long periods, or in older people. The withdrawal of the drug usually reverses the symptoms.  


  • Nutritional deficiencies: Deficiencies of certain nutrients, especially B vitamins, can cause dementia if not corrected. 


  • Chronic alcoholism: Dementia in people with chronic alcoholism is believed to result from other complications such as liver disease and nutritional deficiencies.


Dementia Symptoms

Symptoms of dementia vary considerably by the individual and the underlying cause of the dementia. Most people affected by dementia have some (but not all) of these symptoms. The symptoms may be very obvious, or they may be very subtle and go unrecognized for some time. The first sign of dementia is usually loss of short-term memory. The person repeats what he just said or forgets where she put an object just a few minutes ago. Other symptoms and signs are as follows:

Early dementia

  • Word-finding difficulty - May be able to compensate by using synonyms or defining the word


  • Forgetting names, appointments, or whether or not the person has done something; losing things


  • Difficulty performing familiar tasks – Driving, cooking a meal, household chores, managing personal finances


  • Personality changes (for example, sociable person becomes withdrawn or a quiet person is coarse and silly)


  • Uncharacteristic behavior


  • Mood swings, often with brief periods of anger or rage


  • Poor judgment


  • Behavior disorders – Paranoia and suspiciousness


  • Decline in level of functioning but able to follow established routines at home


  • Confusion, disorientation in unfamiliar surroundings – May wander, trying to return to familiar surroundings
Intermediate dementia
  • Worsening of symptoms seen in early dementia, with less ability to compensate 


  • Unable to carry out activities of daily living (eg, bathing, dressing, grooming, feeding, using the toilet) without help 


  • Disrupted sleep (often napping in the daytime, up at night) 


  • Unable to learn new information  


  • Increasing disorientation and confusion even in familiar surroundings  


  • Greater risk of falls and accidents due to poor judgment and confusion  


  • Behavior disorders – Paranoid delusions, aggressiveness, agitation, inappropriate sexual behavior 


  • Hallucinations 


  • Confabulation (believing the person has done or experienced things that never happened) 


  • Inattention, poor concentration, loss of interest in the outside world  


  • Abnormal moods (anxiety, depression)
Severe dementia
  • Worsening of symptoms seen in early and intermediate dementia 


  • Complete dependence on others for activities of daily living  


  • May be unable to walk or move from place to place unassisted  


  • Impairment of other movements such as swallowing – Increases risk of malnutrition, choking, and aspiration (inhaling foods and beverages, saliva, or mucus into lungs)  


  • Complete loss of short- and long-term memory – May be unable to recognize even close relatives and friends  


  • Complications – Dehydration, malnutrition, problems with bladder control, infections, aspiration, seizures, pressure sores, injuries from accidents or falls
The person may not be aware of these problems, especially the behavior problems. This is especially true in the later stages of dementia.

Depression in elderly people can cause dementialike symptoms. As many as 40% of people with dementia are also depressed. Common symptoms of depression include depressed mood, loss of interest in activities once enjoyed, withdrawal from others, sleep disturbances, weight gain or loss, suicidal thoughts, feelings of worthlessness, and loss of ability to think clearly or concentrate.

People with irreversible or untreated dementia present a slow, gradual decline in mental functions and movements over several years. Total dependence and death, often from infection, are the last stages.


When to Seek Medical Care

A person affected with dementia may not be aware he or she has a problem. Most people with dementia are brought to medical attention by a caring relative or friend. Any of the following warrant a visit to the person’s health care provider.

  • Marked loss of short-term memory 


  • Behavior or personality changes  


  • Inappropriate or uncharacteristic behavior  


  • Depressed mood  


  • Marked mood swings  


  • Inability to carry out daily tasks such as bathing, dressing, feeding, using the toilet, or household chores  


  • Carelessness in personal hygiene  


  • Persistent word-finding difficulties 


  • Persistent or frequent poor judgment  


  • Persistent or frequent confusion or disorientation, especially in familiar situations


  • Inability to manage personal finances


Exams and Tests

In some people, the signs and symptoms of dementia are easily recognized; in others, they can be very subtle. A careful and thorough evaluation is needed to identify their true cause.

  • The individual’s health care provider will conduct a detailed medical interview to develop a picture of the symptoms. The interview will address the symptoms and when they began, the person’s medical problems now and in the past, family medical problems, medications, work and travel history, and habits and lifestyle. 


  • Family members, especially those who live with the affected person, will also be asked about his or her symptoms. 


  • The review of medications is very important, especially for seniors, who are more likely to take several medications and to experience side effects. 


  • A thorough physical examination will look for evidence of illness and dysfunction that might shed light on what is causing the symptoms. 


  • This evaluation is designed to identify reversible, treatable causes of dementia symptoms.  


  • At any point in the evaluation or treatment, the person with dementia may be referred to specialists in conditions of older people (geriatricians), in brain disorders (neurologists), or in mental disorders (psychiatrists).
An assessment of dementia symptoms should include a mental status evaluation. This evaluation uses various “pencil and paper,” “talking,” and physical tests to identify brain dysfunction. A more thorough type of testing, performed by a psychologist, is called neuropsychologic testing.
  • Mental status examination or neuropsychological testing pinpoints the nature and measures the severity of the person’s mental problems. This can help give a more accurate diagnosis of the problems and, thus, can help in treatment planning. 


  • Testing includes noting the individual’s appearance, mood, anxiety level, and experience of delusions or hallucinations.  


  • Testing assesses cognitive abilities such as memory, attention, orientation to time and place, use of language, and abilities to carry out various tasks and follow instructions.  


  • Reasoning, abstract thinking, and problem solving are also tested.
Lab tests may be used to identify or rule out possible causes of dementia.
  • Routine blood tests include a complete blood cell (CBC) count, blood chemistry, liver function tests, thyroid function tests, and vitamin B levels (especially folic acid and Vitamin B-12). 


  • Other blood tests (for example, syphilis and HIV testing, levels of intoxicating drugs, arterial blood gases [in hypoxia], specific hormone tests, or measurement of heavy metals) are used only when a person is at high risk for specific conditions.  


  • Urine tests may be needed to assess blood abnormalities further, to detect certain drugs, or to rule out certain kidney and metabolic disorders.  


  • Cerebrospinal fluid testing may be necessary to rule out brain infections, brain tumors, and hydrocephalus with elevated fluid pressure. A sample of the fluid is obtained by a procedure called a lumbar puncture (spinal tap), in which a long needle is inserted between 2 vertebrae of the spine at the lower back.
In some cases, imaging studies of the brain may be necessary to detect conditions such as normal pressure hydrocephalus, brain tumor, or infarction or bleeding in the brain.
  • CT scan is usually adequate, although MRI may be used if greater detail is needed. 


  • Single-photon emission CT (SPECT) imaging detects blood flow in the brain and is used in some medical centers to distinguish Alzheimer disease from vascular dementia.


  • Electroencephalography (EEG) is not an imaging study but a recording of the electrical activity in different parts of the brain. It is used in people who are having seizures but may help diagnose other disorders as well.


Dementia Treatment

Although an individual with dementia should always be under medical care, family members handle much of the day-to-day care.  Medical care should focus on optimizing the individual’s health and quality of life while helping family members cope with the many challenges of caring for a loved one with dementia. Medical care depends on the underlying condition, but it most often consists of medications and nondrug treatments such as behavioral therapy.

|Self-Care at Home|

Many individuals with dementia in the early and intermediate stages are able to live independently.

  • With regular checks by a local relative or friend, they are able to live without constant supervision.


  • Those who have difficulty with activities of daily living require at least part-time help from a family caregiver or home health aide.


  • Visiting nurses can make sure that these individuals take their medications as directed.


  • Housekeeping help is available for those who cannot keep up with household chores.
Other affected individuals require closer supervision or more constant assistance.
  • Round-the-clock help in the home is available, but it is too expensive for many.


  • Individuals who require this level of assistance may need to move from their home to the home of a family caregiver or to an assisted-living facility.


  • Many families prefer these options because they give the individual the greatest possible independence and quality of life.
For individuals who are able to remain at home or to retain some degree of independent living,  maintaining a familiar and safe environment is important.
  • The individual must be comfortable and safe if he or she is to continue to function independently. 


  • Minor modifications of the home may be needed. Most important is to prevent falls and accidents. Getting rid of area rugs and putting grab bars in the shower and mats in the tub are easy important steps to make the environment safe. Sometimes, disabling the stove or using child proof knobs may be necessary to prevent cooking accidents.


  • The balance between safety and independence must be assessed often. If necessary, changes must be made to keep the individual safe.
Individuals with dementia should remain physically, mentally, and socially active.
  • Daily physical exercise helps the body and mind function and maintains a healthy weight. Exercise can be as simple as a daily walk.


  • The individual should engage in as much mental activity as he or she can handle. Mental activity is believed to slow the progress of some types of dementia. Puzzles, games, reading, and safe hobbies and crafts are good choices.


  • Social interaction is stimulating and enjoyable for most people with dementia. Most senior centers or community centers have scheduled activities, such as parties and clubs, that are suitable for those with dementia.
A balanced diet that includes low-fat protein foods and plenty of fruits and vegetables helps maintain a healthy weight and prevent malnutrition and constipation. An individual with dementia should not smoke, both for health and safety reasons.

|Medical Treatment|

Treatment of dementia focuses on correcting all reversible factors and slowing irreversible factors. This can improve function significantly, even in people who have irreversible conditions such as Alzheimer disease. Some of the important treatment strategies in dementia are described here.

Correcting drug doses and/or withdrawing misused drugs

Many seniors require ongoing medications for chronic conditions such as heart failure, high blood pressure, high cholesterol, diabetes, prostate enlargement, and many others.

  • Reviewing these medications can reveal incorrect doses, drug interactions, side effects, or poor compliance (taking drugs inappropriately or not at all) that could be responsible for part or all of the person’s dementia symptoms.


  • Adjustment of doses, elimination of interactions, and development of a drug-taking regimen to ensure that the person takes his or her drugs as prescribed can help reverse symptoms.
Slowing progression of dementia

Dementia due to some conditions, such as Alzheimer disease, can sometimes be slowed in the early-to-intermediate stages with medication. Many different types of medications have been or are being tried in dementia. The medications that have worked the best so far are the cholinesterase inhibitors.

  • Cholinesterase is an enzyme that breaks down a chemical in the brain called acetylcholine. Acetylcholine acts as an important messaging system in the brain.


  • Cholinesterase inhibitors, by stopping the breakdown of this neurotransmitter, increase the amount of acetylcholine in the brain of a person with dementia and improve brain function.


  • These drugs not only improve or stabilize mental functions, they may also have positive effects on behavior and activities of daily living.


  • They are not a cure, and in many people the effect is fairly modest. In others, these drugs do not have much of a noticeable effect. Moreover, the effects are temporary, since these drugs do not change the underlying medical condition.


  • Another drug, memantine (Namenda), which works in a different way, is showing promise in certain types of dementia.
Treating depression

Because depression is so common in people with dementia, treatment of depression can at least partially relieve symptoms.

  • Depression is usually treated with any of a group of drugs known as antidepressants.


  • The most important of these are the drugs known as selective serotonin re-uptake inhibitors (SSRIs).


  • Stimulant drugs such as methylphenidate (used to treat attention deficit disorders in children) may be used to treat depression in people with dementia.


  • Some of the medications that treat depression also help with anxiety. 
Treating specific medical disorders

Treatable disorders revealed by the diagnostic evaluation should receive prompt attention

  • Common, treatable conditions that cause or worsen dementia include high blood pressure, high cholesterol, heart disease, diabetes, infections, head injuries, brain tumors, hydrocephalus, anemia, hypoxia, hormone imbalances, and nutritional deficiencies.


  • Treatment varies by disorder.
Treating specific symptoms and complications

Some symptoms and complications of dementia can be relieved by medical treatment, even if no treatment exists for the underlying cause of the dementia.
  • Behavioral disorders may improve with individualized therapy aimed at identifying and changing specific problem behaviors.


  • Mood swings and emotional outbursts may be treated with mood-stabilizing drugs.


  • Agitation and psychosis (hallucinations and delusions) may be treated with antipsychotic medication or, in some cases, anticonvulsants.


  • Seizures usually require anticonvulsant medication.


  • Sleeplessness can be treated by changing certain habits and, in some cases, by taking medication.


  • Infections require treatment with antibiotics.


  • Dehydration and malnutrition may be treated with rehydration and supplements or with behavioral therapies.


  • Aspiration, pressure sores, and injuries can be prevented with appropriate care.

|Medications|

Except for the cholinesterase inhibitors, the US Food and Drug Administration (FDA) has not approved any drug specifically for dementia. The drugs listed here are some of the most frequently prescribed from each class.

  • Cholinesterase inhibitors - Tacrine (Cognex), donepezil (Aricept), rivastigmine (Exelon), galantamine/galanthamine (Reminyl)


  • Antidepressants/anxiolytics - Fluoxetine (Prozac), sertraline (Zoloft), paroxetine (Paxil), citalopram (Celexa)


  • Antipsychotics – Haloperidol (Haldol), risperidone (Risperdal), quetiapine (Seroquel), olanzapine (zyprexa), ziprasidone (Geodon)


  • Anticonvulsants – Valproic acid (Depakote), carbamazepine (Tegretol) gabapentin (Neurontin), lamotrigine (Lamictal)
All drugs cause side effects. In prescribing a drug, doctors weigh whether the benefits of the drug outweigh the side effects. Seniors are especially likely to experience drug side effects. People with dementia who are taking any of these drugs must be checked often to make sure that the side effects are tolerable.

|Surgery|

No accepted surgical treatment can manage dementia. Surgery is reserved for specific conditions underlying dementia that might improve the condition, such as removal of a brain tumor or drainage of excess cerebrospinal fluid.

|Other Therapy|

Occupational therapy may help persons with dementia with activities of daily living such as feeding oneself. Physical therapy may improve mobility by teaching patients to use canes or walkers properly and showing them how to get in and out of chairs or beds. Music and art activities may be soothing and rewarding for some people with dementia. Respite care, having a person with dementia go temporarily to a nursing home, is another important source of help for family caregivers.


Next Steps

|Follow-up|

After dementia has been diagnosed and treatment begun, the individual requires regular checkups with his or her health care provider.

  • These checkups allow the health care provider to see how well treatment is working and to make adjustments as necessary.

  • They allow detection of new medical and behavior problems that could benefit from treatment.

  • These visits also give the family caregiver(s) an opportunity to discuss problems with the individual’s care.

|Prevention|

No known way to prevent irreversible dementia or even many types of reversible dementia exists. The following may help prevent certain types of dementia:

  • Maintaining a healthy lifestyle that includes a balanced diet, regular exercise, moderate use of alcohol, and no smoking or substance abuse


  • Taking precautions to prevent infections (such as practicing safe sex)


  • Using protective equipment such as a seat belt or motorcycle helmet to prevent head injury
The following may allow early treatment and at least partial reversal of dementia:
  • Being alert for symptoms and signs that suggest dementia


  • Early recognition of underlying medical conditions, such as HIV infection

|Outlook|

The outlook for most types of dementia is poor. Irreversible or untreated dementia usually continues to worsen over time. The condition usually progresses over years until the person’s death.

Making decisions about end-of-life care is important.

  • The earlier in the disease these issues are discussed, the more likely the person with dementia will be able to express his or her wishes about medical care at the end of life.


  • The issues may be presented by your health care provider. If not, ask about them.


  • These issues include use of aggressive interventions and hospital care, artificial feeding, and medical treatment for medical illnesses.


  • These issues should be discussed by family members and decisions made about how to deal with them when the time comes.


  • The decisions should be documented in the person’s medical records.

|Support Groups and Counseling|

Caring for a person with dementia can be very difficult. It affects every aspect of your life, including family relationships, work, financial status, social life, and physical and mental health. You may feel unable to cope with the demands of caring for a dependent, difficult relative. Besides the sadness of seeing the effects of your loved one’s disease, you may feel frustrated, overwhelmed, resentful, and angry. These feelings may, in turn, leave you feeling guilty, ashamed, and anxious. Depression is not uncommon.

Different caregivers have different thresholds for tolerating these challenges. For many caregivers, just “venting” or talking about the frustrations of caregiving can be enormously helpful. Others need more but may feel uneasy about asking for the help they need. One thing is certain, though: If the caregiver is given no relief, he or she can burn out, develop his or her own mental and physical problems, and become unable to care for the person with dementia.

This is why support groups were invented. Support groups are groups of people who have lived through the same set of difficult experiences and want to help themselves and others by sharing coping strategies. Mental health professionals strongly recommend that family caregivers take part in support groups. Support groups serve a number of different purposes for a person living with the extreme stress of being a caregiver for a person with dementia.

  • The group allows the person to express his or her true feelings in an accepting, nonjudgmental atmosphere.


  • The group’s shared experiences allow the caregiver to feel less alone and isolated.


  • The group can offer fresh ideas for coping with specific problems.


  • The group can introduce the caregiver to resources that may be able to provide some relief.


  • The group can give the caregiver the strength he or she needs to ask for help.
Support groups meet in person, on the telephone, or on the Internet. To find a support group that works for you, contact the organizations listed below. You can also ask your health care provider or behavioral therapist or go on the Internet. If you do not have access to the Internet, go to a public library. For more information about support groups, contact these agencies:
  • Family Caregiver Alliance, National Center on Caregiving - (800) 445-8106


  • Supportpath, Dementia


  • National Alliance for Caregiving


  • Eldercare Locator Service – (800) 677-1116


For More Information

A helpful book for families coping with Alzheimer disease is The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life by Nancy L. Mace and Peter V. Rabins.

The following organizations also provide helpful information:

Alzheimer’s Association
919 E. Michigan Avenue, Suite 1000
Chicago, IL 60611
(800) 272-3900
 
American Association for Geriatric Psychiatry
7910 Woodmont Avenue, Suite 1050
Bethesda, MD 20814
(301) 654-7850
 
Family Caregiver Alliance, National Center on Caregiving
690 Market Street, Suite 600
San Francisco, CA 94104
(800) 445-8106
(415) 434-3388
 
National Alliance for Caregiving
4729 Montgomery Lane, 5th Floor
Bethesda, MD 20814
 
National Institute on Aging
Alzheimer’s Disease Education and Referral Center
P.O. Box 8250
Silver Spring, MD 20907-8250
(800) 438-4380
(301) 495-3311
 
National Institute of Neurological Disorders and Stroke, National Institutes of Health
31 Center Drive, MSC 2540
Building 31, Room 8A-06
Bethesda, MD 20892-2540
(800) 352-9424 (recording)
(301) 496-5751
 
National Mental Health Association
2001 North Beauregard Street, 12th Floor
Alexandria, VA 22311
(703) 684-7722

|Web Links|

Alzheimer’s Association

Alzheimer's Disease Education and Referral (ADEAR) Center, National Institute on Aging

American Association of Geriatric Psychiatry, Alzheimer's and Related Dementias Fact Sheet

Family Caregiver Alliance, National Center on Caregiving

National Alliance for Caregiving

National Institute on Aging

National Institute of Mental Health, National Institutes of Health

National Institute of Neurological Disorders and Stroke, National Institutes of Health

National Mental Health Association, What Is Multi-Infarct Dementia?

Supportpath


Synonyms and Keywords

activities of daily living, ADLs, aging, Alzheimer disease, Alzheimer’s disease, assisted living, atherosclerosis, benign senescent forgetfulness, Binswanger disease, brain damage, caregiver, caregiving, cerebral atrophy, cognition, cognitive deficits, cognitive functions, elderly, forgetful, frontotemporal dementia, hardening of the arteries, head injury, Huntington disease, infarction, institution, institutionalization, institutionalize, Lewy body dementia, memory loss, mental status evaluation, multi-infarct dementia, neuropsychologic testing, nursing home, organic brain syndrome, Parkinson disease, Parkinson’s disease, Pick disease, Pick’s disease, senile, senility, seniors, stroke, traumatic brain injury, vascular dementia, dementia overview, dementia due to HIV infection, dementia in head injury, dementia medications, Creutzfeldt-Jakob disease, normal pressure hydrocephalus, brain tumors, alcoholism, early dementia, intermediate dementia, severe dementia


Authors and Editors

Author: Kathryn L Hale, MS, PA-C, Medical Writer, .com, Inc.

Coauthor(s): Julia Frank, MD, Director of Medical Student Education in Psychiatry, Associate Professor, Department of Psychiatry and Behavioral Sciences, George Washington University School of Medicine.

Editors: Nestor Galvez-Jimenez, MD, Program Director of Movement Disorders, Director of Neurology Residency Training Program, Department of Neurology, Division of Medicine, Cleveland Clinic Florida; Francisco Talavera, PharmD, PhD, Senior Pharmacy Editor, ; Helmi L Lutsep, MD, Associate Director, Oregon Stroke Center; Associate Professor, Department of Neurology, Oregon Health and Science University.