MyMedExpert Health Articles

Introduction
This patient summary on loss, grief, and bereavement is adapted from the summary written for health professionals by cancer experts. This and other credible information about cancer treatment, screening, prevention, supportive care, and ongoing clinical trials, is available from the National Cancer Institute. The passage from the final stage of cancer to the death of a loved one is different for everyone. This summary describes loss, grief, and bereavement; the stages of grief; and methods for coping with grief. This summary also includes sections on children and grief.

Overview
People cope with the loss of a loved one in many ways. For some, the experience may lead to personal growth, even though it is a difficult and trying time. There is no right way of coping with death. The way a person grieves depends on the personality of that person and the relationship with the person who has died. How a person copes with grief is affected by their experience with cancer, the way the disease progressed, the person’s cultural and religious background, coping skills, mental history, support systems, and the person’s social and financial status.

The terms grief, bereavement, and mourning are often used in place of each other, but they have different meanings.

Grief is the normal process of reacting to the loss. Grief reactions may be felt in response to physical losses (for example, a death) or in response to symbolic or social losses (for example, divorce or loss of a job). Each type of loss means the person has had something taken away. As a family goes through a cancer illness, many losses are experienced, and each triggers its own grief reaction. Grief may be experienced as a mental, physical, social, or emotional reaction. Mental reactions can include anger, guilt, anxiety, sadness, and despair. Physical reactions can include sleeping problems, changes in appetite, physical problems, or illness. Social reactions can include feelings about taking care of others in the family, seeing family or friends, or returning to work. As with bereavement, grief processes depend on the relationship with the person who died, the situation surrounding the death, and the person’s attachment to the person who died. Grief may be described as the presence of physical problems, constant thoughts of the person who died, guilt, hostility, and a change in the way one normally acts.

Bereavement is the period after a loss during which grief is experienced and mourning occurs. The time spent in a period of bereavement depends on how attached the person was to the person who died, and how much time was spent anticipating the loss.

Mourning is the process by which people adapt to a loss. Mourning is also influenced by cultural customs, rituals, and society’s rules for coping with loss.

Grief work includes the processes that a mourner needs to complete before resuming daily life. These processes include separating from the person who died, readjusting to a world without him or her, and forming new relationships. To separate from the person who died, a person must find another way to redirect the emotional energy that was given to the loved one. This does not mean the person was not loved or should be forgotten, but that the mourner needs to turn to others for emotional satisfaction. The mourner’s roles, identity, and skills may need to change to readjust to living in a world without the person who died. The mourner must give other people or activities the emotional energy that was once given to the person who died in order to redirect emotional energy.

People who are grieving often feel extremely tired because the process of grieving usually requires physical and emotional energy. The grief they are feeling is not just for the person who died, but also for the unfulfilled wishes and plans for the relationship with the person. Death often reminds people of past losses or separations. Mourning may be described as having the following 3 phases:

The urge to bring back the person who died.
Disorganization and sadness.
Reorganization.
Phases of a Life-Threatening Illness
Understanding how other people cope with a life-threatening illness may help the patient and his or her family prepare to cope with their own illness. A life-threatening illness may be described as having the following 4 phases:

Phase before the diagnosis.
The acute phase.
The chronic phase.
Recovery or death.
The phase before the diagnosis of a life-threatening illness is the period of time just before the diagnosis when a person realizes that he or she may develop an illness. This phase is not usually a single moment, but extends throughout the period when the person has a physical examination, including various tests, and ends when the person is told of the diagnosis.

The acute phase occurs at the time of the diagnosis when a person is forced to understand the diagnosis and make decisions about his or her medical care.

The chronic phase is the period of time between the diagnosis and the result of treatment. It is the period when a patient tries to cope with the demands of life while also undergoing treatment and coping with the side effects of treatment. In the past, the period between a cancer diagnosis and death usually lasted only a few months, and this time was usually spent in the hospital. Today, people can live for years after being diagnosed with cancer.

In the recovery phase, people cope with the mental, social, physical, religious, and financial effects of cancer.

The final (terminal) phase of a life-threatening illness occurs when death is likely. The focus changes from curing the illness or prolonging life, to providing comfort and relief from pain. Religious concerns are often the focus during this time.

The Pathway to Death
People who are dying may move towards death over longer or shorter periods of time and in different ways. Different causes of death result in different paths toward death.

The pathway to death may be long and slow, sometimes lasting years, or it may be a rapid fall towards death (for example, after a car accident) when the chronic phase of the illness, if it exists at all, is short. The peaks and valleys pathway describes the patient who repeatedly gets better and then worse again (for example, a patient with AIDS or leukemia). Another pathway to death may be described as a long, slow period of failing health and then a period of stable health (for example, patients whose health gets worse and then stabilizes at a new, more limiting level). Patients on this pathway must readjust to losses in functioning ability.

Deaths from cancer often occur over a long period of time, and may involve long-term pain and suffering, and/or loss of control over one’s body or mind. Deaths caused by cancer are likely to drain patients and families physically and emotionally because they occur over a long period of time.

Anticipatory Grief
Anticipatory grief is the normal mourning that occurs when a patient or family is expecting a death. Anticipatory grief has many of the same symptoms as those experienced after a death has occurred. It includes all of the thinking, feeling, cultural, and social reactions to an expected death that are felt by the patient and family.

Anticipatory grief includes depression, extreme concern for the dying person, preparing for the death, and adjusting to changes caused by the death. Anticipatory grief gives the family more time to slowly get used to the reality of the loss. People are able to complete unfinished business with the dying person (for example, saying “good-bye,” “I love you,” or “I forgive you”).

Anticipatory grief may not always occur. Anticipatory grief does not mean that before the death, a person feels the same kind of grief as the grief felt after a death. There is not a set amount of grief that a person will feel. The grief experienced before a death does not make the grief after the death last a shorter amount of time.

Grief that follows an unplanned death is different from anticipatory grief. Unplanned loss may overwhelm the coping abilities of a person, making normal functioning impossible. Mourners may not be able to realize the total impact of their loss. Even though the person recognizes that the loss occurred, he or she may not be able to accept the loss mentally and emotionally. Following an unexpected death, the mourner may feel that the world no longer has order and does not make sense.

Some people believe that anticipatory grief is rare. To accept a loved one’s death while he or she is still alive may leave the mourner feeling that the dying patient has been abandoned. Expecting the loss often makes the attachment to the dying person stronger. Although anticipatory grief may help the family, the dying person may experience too much grief, causing the patient to become withdrawn.

Phases of Grief
The process of bereavement may be described as having 4 phases:

Shock and numbness: Family members find it difficult to believe the death; they feel stunned and numb.
Yearning and searching: Survivors experience separation anxiety and cannot accept the reality of the loss. They try to find and bring back the lost person and feel ongoing frustration and disappointment when this is not possible.
Disorganization and despair: Family members feel depressed and find it difficult to plan for the future. They are easily distracted and have difficulty concentrating and focusing.
Reorganization.
Treatment
Most of the support that people receive after a loss comes from friends and family. Doctors and nurses may also be a source of support. For people who experience difficulty in coping with their loss, grief counseling or grief therapy may be necessary.

Grief counseling helps mourners with normal grief reactions work through the tasks of grieving. Grief counseling can be provided by professionally trained people, or in self-help groups where bereaved people help other bereaved people. All of these services may be available in individual or group settings.

The goals of grief counseling include:

Helping the bereaved to accept the loss by helping him or her to talk about the loss.
Helping the bereaved to identify and express feelings related to the loss (for example, anger, guilt, anxiety, helplessness, and sadness).
Helping the bereaved to live without the person who died and to make decisions alone.
Helping the bereaved to separate emotionally from the person who died and to begin new relationships.
Providing support and time to focus on grieving at important times such as birthdays and anniversaries.
Describing normal grieving and the differences in grieving among individuals.
Providing continuous support.
Helping the bereaved to understand his or her methods of coping.
Identifying coping problems the bereaved may have and making recommendations for professional grief therapy.
Grief therapy is used with people who have more serious grief reactions. The goal of grief therapy is to identify and solve problems the mourner may have in separating from the person who died. When separation difficulties occur, they may appear as physical or behavior problems, delayed or extreme mourning, conflicted or extended grief, or unexpected mourning (although this is seldom present with cancer deaths).

Grief therapy may be available as individual or group therapy. A contract is set up with the individual that establishes the time limit of the therapy, the fees, the goals, and the focus of the therapy.

In grief therapy, the mourner talks about the deceased and tries to recognize whether he or she is experiencing an expected amount of emotion about the death. Grief therapy may allow the mourner to see that anger, guilt, or other negative or uncomfortable feelings can exist at the same time as more positive feelings about the person who died.

Human beings tend to make strong bonds of affection or attachment with others. When these bonds are broken, as in death, a strong emotional reaction occurs. After a loss occurs, a person must accomplish certain tasks to complete the process of grief. These basic tasks of mourning include accepting that the loss happened, living with and feeling the physical and emotional pain of grief, adjusting to life without the loved one, and emotionally separating from the loved one and going on with life without him or her. It is important that these tasks are completed before mourning can end.

In grief therapy, 6 tasks may be used to help a mourner work through grief:

Develop the ability to experience, express, and adjust to painful grief-related changes.
Find effective ways to cope with painful changes.
Establish a continuing relationship with the person who died.
Stay healthy and keep functioning.
Re-establish relationships and understand that others may have difficulty empathizing with the grief they experience.
Develop a healthy image of oneself and the world.
Complications in grief may come about due to uncompleted grief from earlier losses. The grief for these earlier losses must be managed in order to handle the current grief. Grief therapy includes dealing with the blockages to the mourning process, identifying unfinished business with the deceased, and identifying other losses that result from the death. The bereaved is helped to see that the loss is final and to picture life after the grief period.

Complicated Grief
Complicated grief reactions require more complex therapies than uncomplicated grief reactions. Adjustment disorders (especially depressed and anxious mood or disturbed emotions and behavior), major depression, substance abuse, and even post-traumatic stress disorder are some of the common problems of complicated bereavement. Complicated grief is identified by the extended length of time of the symptoms, the interference caused by the symptoms, or by the intensity of the symptoms (for example, intense suicidal thoughts or acts).

Complicated or unresolved grief may appear as a complete absence of grief and mourning, an ongoing inability to experience normal grief reactions, delayed grief, conflicted grief, or chronic grief. Factors that contribute to the chance that one may experience complicated grief include the suddenness of the death, the gender of the person in mourning, and the relationship to the deceased (for example, an intense, extremely close, or very contradictory relationship). Grief reactions that turn into major depression should be treated with both drug and psychological therapy. One who avoids any reminders of the person who died, who constantly thinks or dreams about the person who died, and who gets scared and panics easily at any reminders of the person who died may be suffering from post-traumatic stress disorder. Substance abuse may occur, frequently in an attempt to avoid painful feelings about the loss and symptoms (such as sleeplessness), and can also be treated with drugs and psychological therapy.

Children and Grief
In the past, children were thought to be miniature adults and were expected to behave as adults. It is now understood that there are differences in the ways in which children and adults mourn.

Unlike adults, bereaved children do not experience continual and intense emotional and behavioral grief reactions. Children may seem to show grief only occasionally and briefly, but in reality a child’s grief usually lasts longer than that of an adult. This may be explained by the fact that a child’s ability to experience intense emotions is limited. Mourning in children may need to be addressed again and again as the child gets older. Since bereavement is a process that continues over time, children will think about the loss repeatedly, especially during important times in their life, such as going to camp, graduating from school, getting married, or giving birth to their own children.

A child’s grief may be influenced by his or her age, personality, stage of development, earlier experiences with death, and his or her relationship with the deceased. The surroundings, cause of death, family members’ ability to communicate with one another and to continue as a family after the death can also affect grief. The child’s ongoing need for care, the child’s opportunity to share his or her feelings and memories, the parent’s ability to cope with stress, and the child’s steady relationships with other adults are also other factors that may influence grief.

Children do not react to loss in the same ways as adults. Grieving children may not show their feelings as openly as adults. Grieving children may not withdraw and dwell on the person who died, but instead may throw themselves into activities (for example, they may be sad one minute and playful the next). Often families think the child doesn’t really understand or has gotten over the death. Neither is true; children’s minds protect them from what is too powerful for them to handle. Children’s grieving periods are shortened because they cannot think through their thoughts and feelings like adults. Also, children have trouble putting their feelings about grief into words. Instead, his or her behavior speaks for the child. Strong feelings of anger and fears of abandonment or death may show up in the behavior of grieving children. Children often play death games as a way of working out their feelings and anxieties. These games are familiar to the children and provide safe opportunities to express their feelings.

Children’s Grief and Developmental Stages
Children at different stages of development have different understandings of death and the events near death.

Infants
Infants do not recognize death, but feelings of loss and separation are part of developing an awareness of death. Children who have been separated from their mother may be sluggish, quiet, unresponsive to a smile or a coo, undergo physical changes (for example, weight loss), be less active, and sleep less.

Age 2-3 years
Children at this age often confuse death with sleep and may experience anxiety as early as age 3. They may stop talking and appear to feel overall distress.

Age 3-6 years
At this age children see death as a kind of sleep; the person is alive, but only in a limited way. The child cannot fully separate death from life. Children may think that the person is still living, even though he or she might have been buried, and ask questions about the deceased (for example, how does the deceased eat, go to the toilet, breathe, or play?). Young children know that death occurs physically, but think it is temporary, reversible, and not final. The child’s concept of death may involve magical thinking. For example, the child may think that his or her thoughts can cause another person to become sick or die. Grieving children under 5 may have trouble eating, sleeping, and controlling bladder and bowel functions.

Age 6-9 years
Children at this age are commonly very curious about death, and may ask questions about what happens to one’s body when it dies. Death is thought of as a person or spirit separate from the person who was alive, such as a skeleton, ghost, angel of death, or bogeyman. They may see death as final and frightening but as something that happens mostly to old people (and not to themselves). Grieving children can become afraid of school, have learning problems, develop antisocial or aggressive behaviors, become overly concerned about their own health (for example, developing symptoms of imaginary illness), or withdraw from others. Or, children this age can become too attached and clinging. Boys usually become more aggressive and destructive (for example, acting out in school), instead of openly showing their sadness. When a parent dies children may feel abandoned by both their deceased parent and their surviving parent because the surviving parent is grieving and is unable to emotionally support the child.

Ages 9 and older
By the time a child is 9 years old, death is known to be unavoidable and is not seen as a punishment. By the time a child is 12 years old, death is seen as final and something that happens to everyone.

Grief and Developmental Stages
Enlarge  Age    Understanding of Death    Expressions of Grief   
Infancy to 2 years Is not yet able to understand death. Quietness, crankiness, decreased activity, poor sleep, and weight loss.
Separation from mother causes changes. 
2-6 years Death is like sleeping. Asks many questions (How does she go to the bathroom? How does she eat?).
Problems in eating, sleeping, and bladder and bowel control.
Fear of abandonment.
Tantrums.
Dead person continues to live and function in some ways. Magical thinking (Did I think something or do something that caused the death? Like when I said I hate you and I wish you would die?).
Death is temporary, not final.
Dead person can come back to life.
6-9 years Death is thought of as a person or spirit (skeleton, ghost, bogeyman).  Curious about death.
Asks specific questions.
May have exaggerated fears about school.
Death is final and frightening.  May have aggressive behaviors (especially boys).
Some concerns about imaginary illnesses.
Death happens to others, it won’t happen to ME. May feel abandoned.
9 and older Everyone will die.  Heightened emotions, guilt, anger, shame.
Increased anxiety over own death.
Mood swings.
Death is final and cannot be changed. Fear of rejection; not wanting to be different from peers.
Even I will die. Changes in eating habits.
Sleeping problems.
Regressive behaviors (loss of interest in outside activities). 
Impulsive behaviors.
Feels guilty about being alive (especially related to death of a brother, sister, or peer).
In American society, many grieving adults withdraw and do not talk to others. Children, however, often talk to the people around them (even strangers) to see the reactions of others and to get clues for their own responses. Children may ask confusing questions. For example, a child may ask, “I know grandpa died, but when will he come home?” This is a way of testing reality and making sure the story of the death has not changed.

Other Issues for Grieving Children
Children’s grief expresses 3 issues:

Did I cause the death to happen?
Is it going to happen to me?
Who is going to take care of me?
Did I cause the death to happen?
Children often think that they have magical powers. If a mother says in irritation, “You’ll be the death of me” and later dies, her child may wonder if he or she actually caused the mother’s death. Also, when children argue, one may say (or think), “I wish you were dead.” Should that child die, the surviving child may think that his or her thoughts actually caused the death.

Is it going to happen to me?
The death of another child may be especially hard for a child. If the child thinks that the death may have been prevented (by either a parent or a doctor) the child may think that he or she could also die.

Who is going to take care of me?
Since children depend on parents and other adults to take care of them, a grieving child may wonder who will care for him or her after the death of an important person.

Grieving Children: Treatment
A child’s grieving process may be made easier by being open and honest with the child about death, using direct language, and incorporating the child into memorial ceremonies for the person who died.

Explanation of death
Not talking about death (which indicates that the subject is off-limits) does not help children learn to cope with loss. When discussing death with children, explanations should be simple and direct. Each child should be told the truth using as much detail as he or she is able to understand. The child’s questions should be answered honestly and directly. Children need to be reassured about their own security (they often worry that they will also die, or that their surviving parent will go away). Children’s questions should be answered, making sure that the child understands the answers.

Correct language
A discussion about death should include the proper words, such as cancer, died, and death. Substitute words or phrases (for example, “he passed away,” “he is sleeping,” or “we lost him”) should never be used because they can confuse children and lead to misunderstandings.

Planning memorial ceremonies
When a death occurs, children can and should be included in the planning and participation of memorial ceremonies. These events help children (and adults) remember loved ones. Children should not be forced to be involved in these ceremonies, but they should be encouraged to take part in those portions of the events with which they feel most comfortable. If the child wants to attend the funeral, wake, or memorial service, he or she should be given in advance a full explanation of what to expect. The surviving parent may be too involved in his or her own grief to give their child full attention, therefore, it may be helpful to have a familiar adult or family member care for the grieving child.

References and resources for grieving children
There are many helpful books and videos that can be shared with grieving children:

Worden JW: Children and Grief: When a Parent Dies. New York: The Guilford Press, 1996.
Doka KJ, Ed.: Children Mourning, Mourning Children. Washington, DC: Hospice Foundation of America, 1995.
Wass H, Corr CA: Childhood and Death. Washington, DC: Hemisphere Publishing Corporation, 1984.
Corr CA, McNeil JN: Adolescence and Death. New York: Springer Publishing Company, 1986.
Corr, CA, Nabe CM, Corr DM: Death and Dying, Life and Living. 2nd ed., Pacific Grove: Brooks/Cole Publishing Company, 1997.
Grollman EA: Talking About Death: A Dialogue Between Parent and Child. 3rd ed., Boston: Beacon Press, 1990.
Schaefer D, Lyons C: How Do We Tell The Children?: Helping Children Understand And Cope When Someone Dies. New York: Newmarket Press, 1988.
Wolfelt A: Helping Children Cope with Grief. Muncie: Accelerated Development, 1983.
Walker A: To Hell with Dying. San Diego: Harcourt Brace Jovanovich, 1988.
Williams M: Velveteen Rabbit. Garden City: Doubleday, 1922.
Viost J: The Tenth Good Thing About Barney. New York: Atheneum, 1971.
Tiffault BW: A Quilt for Elizabeth. Omaha: Centering Corporation, 1992.
Levine J: Forever in My Heart: A Story to Help Children Participate in Life as a Parent Dies. Burnsville, NC: Rainbow Connection, 1992.
Knoderer K: Memory Book: A Special Way to Remember Someone You Love. Warminster: Mar-Co Products, 1995.
de Paola T: Nana Upstairs and Nana Downstairs. New York, NY: GP Putnam’s Sons, 1973.

Culture and Response to Grief and Mourning
Grief felt for the loss of a loved one, the loss of a treasured possession, or a loss associated with an important life change, occurs across all ages and cultures. However, the role that cultural heritage plays in an individual’s experience of grief and mourning is not well understood. Attitudes, beliefs, and practices regarding death must be described according to myths and mysteries surrounding death within different cultures.

Individual, personal experiences of grief are similar in different cultures. This is true even though different cultures have different mourning ceremonies, traditions, and behaviors to express grief. Helping families cope with the death of a loved one includes showing respect for the family’s cultural heritage and encouraging them to decide how to honor the death. Important questions that should be asked of people who are dealing with the loss of a loved one include:

What are the cultural rituals for coping with dying, the deceased person’s body, the final arrangements for the body, and honoring the death?
What are the family’s beliefs about what happens after death?
What does the family feel is a normal expression of grief and the acceptance of the loss?
What does the family consider to be the roles of each family member in handling the death?
Are certain types of death less acceptable (for example, suicide), or are certain types of death especially hard to handle for that culture (for example, the death of a child)?
Death, grief, and mourning spare no one and are normal life events. All cultures have developed ways to cope with death. Interfering with these practices may interfere with the necessary grieving processes. Understanding different cultures’ response to death can help physicians recognize the grieving process in patients of other cultures.

Source: National Cancer Institute (www.cancer.gov) , National Institutes of Health

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Here are

13 tips to help you:

■ Stick to a sleep schedule. Go to bed and wake up at the same time each day—even on the weekends.

■ Exercise is great but not too late in the day. Avoid exercising closer than 5 or 6 hours before bedtime.

■ Avoid caffeine and nicotine. The stimulating effects of caffeine in coffee, colas, teas, and chocolate can take as long as 8 hours to wear off fully. Nicotine is also a stimulant.

■ Avoid alcoholic drinks before bed. A “nightcap”might help you get to sleep, but alcohol keeps you in the lighter stages of sleep. You also tend to wake up in the middle of the night when the sedating effects have worn off.

■ Avoid large meals and beverages late at night. A large meal can cause indigestion that interferes
with sleep. Drinking too many fluids at night can cause you to awaken frequently to urinate.

■ Avoid medicines that delay or disrupt your sleep, if possible. Some commonly prescribed heart, blood pressure, or asthma medications, as well as some over-the-counter and herbal remedies for coughs,colds, or allergies, can disrupt sleep patterns.

Don’t take naps after 3 p.m. Naps can boost your brain power, but late afternoon naps can make it
harder to fall asleep at night. Also, keep naps to under an hour.

■ Relax before bed. Take time to unwind. A relaxing activity, such as reading or listening to music, should be part of your bedtime ritual.

■ Take a hot bath before bed. The drop in body temperature after the bath may help you feel sleepy,
and the bath can help relax you.

■ Have a good sleeping environment. Get rid of anything that might distract you from sleep, such as
noises, bright lights, an uncomfortable bed, or a TV or computer in the bedroom. Also, keeping the
temperature in your bedroom on the cool side can help you sleep better.

■ Have the right sunlight exposure. Daylight is key to regulating daily sleep patterns. Try to get outside in natural sunlight for at least 30 minutes each day.

■ Don’t lie in bed awake. If you find yourself still awake after staying in bed for more than 20
minutes, get up and do some relaxing activity until you feel sleepy. The anxiety of not being able to
sleep can make it harder to fall asleep.

■ See a doctor if you continue to have trouble sleeping. If you consistently find yourself feeling tired or not well rested during the day despite spending enough time in bed at night, you may have a sleep disorder. Your family doctor or a sleep specialist should be able to help you.

Source: National Heart, Lung and Blood Institute, National Institutes of Health

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 Introduction
Dementia is a brain disorder that seriously affects a person’s ability to carry out daily activities. The most common form of dementia among older people is Alzheimer’s disease (AD), which initially involves the parts of the brain that control thought, memory, and language. Although scientists are learning more every day, right now they still do not know what causes AD, and there is no cure.

Scientists think that as many as 4.5 million Americans suffer from AD. The disease usually begins after age 60, and risk goes up with age. While younger people also may get AD, it is much less common. About 5 percent of men and women ages 65 to 74 have AD, and nearly half of those age 85 and older may have the disease. It is important to note, however, that AD is not a normal part of aging.

AD is named after Dr. Alois Alzheimer, a German doctor. In 1906, Dr. Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness. He found abnormal clumps (now called amyloid plaques) and tangled bundles of fibers (now called neurofibrillary tangles). Today, these plaques and tangles in the brain are considered signs of AD.

Scientists also have found other brain changes in people with AD. Nerve cells die in areas of the brain that are vital to memory and other mental abilities, and connections between nerve cells are disrupted. There also are lower levels of some of the chemicals in the brain that carry messages back and forth between nerve cells. AD may impair thinking and memory by disrupting these messages.

What Causes AD?
Scientists do not yet fully understand what causes AD. There probably is not one single cause, but several factors that affect each person differently. Age is the most important known risk factor for AD. The number of people with the disease doubles every 5 years beyond age 65.

Family history is another risk factor. Scientists believe that genetics may play a role in many AD cases. For example, early-onset familial AD, a rare form of AD that usually occurs between the ages of 30 and 60, is inherited. The more common form of AD is known as late-onset. It occurs later in life, and no obvious inheritance pattern is seen in most families. However, several risk factor genes may interact with each other and with non-genetic factors to cause the disease. The only risk factor gene identified so far for late-onset AD is a gene that makes one form of a protein called apolipoprotein E (ApoE). Everyone has ApoE, which helps carry cholesterol in the blood. Only about 15 percent of people have the form that increases the risk of AD. It is likely that other genes also may increase the risk of AD or protect against AD, but they remain to be discovered.

Scientists still need to learn a lot more about what causes AD. In addition to genetics and ApoE, they are studying education, diet, and environment to learn what role they might play in the development of this disease. Scientists are finding increasing evidence that some of the risk factors for heart disease and stroke, such as high blood pressure, high cholesterol, and low levels of the vitamin folate, may also increase the risk of AD. Evidence for physical, mental, and social activities as protective factors against AD is also increasing.
What Are the Symptoms of AD?
AD begins slowly. At first, the only symptom may be mild forgetfulness, which can be confused with age-related memory change. Most people with mild forgetfulness do not have AD. In the early stage of AD, people may have trouble remembering recent events, activities, or the names of familiar people or things. They may not be able to solve simple math problems. Such difficulties may be a bother, but usually they are not serious enough to cause alarm.

However, as the disease goes on, symptoms are more easily noticed and become serious enough to cause people with AD or their family members to seek medical help. Forgetfulness begins to interfere with daily activities. People in the middle stages of AD may forget how to do simple tasks like brushing their teeth or combing their hair. They can no longer think clearly. They can fail to recognize familiar people and places. They begin to have problems speaking, understanding, reading, or writing. Later on, people with AD may become anxious or aggressive, or wander away from home. Eventually, patients need total care.
How is AD Diagnosed?
An early, accurate diagnosis of AD helps patients and their families plan for the future. It gives them time to discuss care while the patient can still take part in making decisions. Early diagnosis will also offer the best chance to treat the symptoms of the disease.

Today, the only definite way to diagnose AD is to find out whether there are plaques and tangles in brain tissue. To look at brain tissue, however, doctors usually must wait until they do an autopsy, which is an examination of the body done after a person dies. Therefore, doctors can only make a diagnosis of “possible” or “probable” AD while the person is still alive.

At specialized centers, doctors can diagnose AD correctly up to 90 percent of the time. Doctors use several tools to diagnose “probable” AD, including:

questions about the person’s general health, past medical problems, and ability to carry out daily activities,
tests of memory, problem solving, attention, counting, and language,
medical tests—such as tests of blood, urine, or spinal fluid, and
brain scans.
Sometimes these test results help the doctor find other possible causes of the person’s symptoms. For example, thyroid problems, drug reactions, depression, brain tumors, and blood vessel disease in the brain can cause AD-like symptoms. Some of these other conditions can be treated successfully.
How is AD Treated?
AD is a slow disease, starting with mild memory problems and ending with severe brain damage. The course the disease takes and how fast changes occur vary from person to person. On average, AD patients live from 8 to 10 years after they are diagnosed, though some people may live with AD for as many as 20 years.

No treatment can stop AD. However, for some people in the early and middle stages of the disease, the drugs tacrine (Cognex, which is still available but no longer actively marketed by the manufacturer), donepezil (Aricept), rivastigmine (Exelon), or galantamine (Razadyne, previously known as Reminyl) may help prevent some symptoms from becoming worse for a limited time. Another drug, memantine (Namenda), has been approved to treat moderate to severe AD, although it also is limited in its effects. Also, some medicines may help control behavioral symptoms of AD such as sleeplessness, agitation, wandering, anxiety, and depression. Treating these symptoms often makes patients more comfortable and makes their care easier for caregivers.
New Areas of Research
The National Institute on Aging (NIA), part of the National Institutes of Health (NIH), is the lead Federal agency for AD research. NIA-supported scientists are testing a number of drugs to see if they prevent AD, slow the disease, or help reduce symptoms. Researchers undertake clinical trials to learn whether treatments that appear promising in observational and animal studies actually are safe and effective in people. Some ideas that seem promising turn out to have little or no benefit when they are carefully studied in a clinical trial.

Neuroimaging. Scientists are finding that damage to parts of the brain involved in memory, such as the hippocampus, can sometimes be seen on brain scans before symptoms of the disease occur. An NIA public-private partnership—the AD Neuroimaging Initiative (ADNI)—is a large study that will determine whether magnetic resonance imaging (MRI) and positron emission tomography (PET) scans, or other imaging or biological markers, can see early AD changes or measure disease progression. The project is designed to help speed clinical trials and find new ways to determine the effectiveness of treatments. For more information on ADNI, call the  NIA’s Alzheimer’s Disease Education and Referral (ADEAR) Center at 1-800-438-4380, or visit www.alzheimers.nia.nih.gov.

AD Genetics. The NIA is sponsoring the AD Genetics Study to learn more about risk factor genes for late onset AD. To participate in this study, families with two or more living siblings diagnosed with AD should contact the National Cell Repository for AD toll-free at 1-800-526-2839. Information may also be requested through the study’s website: http://ncrad.iu.edu.

Mild Cognitive Impairment. During the past several years, scientists have focused on a type of memory change called mild cognitive impairment (MCI), which is different from both AD and normal age-related memory change. People with MCI have ongoing memory problems, but they do not have other losses such as confusion, attention problems, and difficulty with language. The NIA-funded Memory Impairment Study compared donepezil, vitamin E, or placebo in participants with MCI to see whether the drugs might delay or prevent progression to AD. The study found that the group with MCI taking donepezil were at reduced risk of progressing to AD for the first 18 months of a 3-year study, when compared with their counterparts on placebo. The reduced risk of progressing from MCI to a diagnosis of AD among participants on donepezil disappeared after 18 months, and by the end of the study, the probability of progressing to AD was the same in the two groups. Vitamin E had no effect at any time point in the study when compared with placebo.

Inflammation. There is evidence that inflammation in the brain may contribute to AD damage. Some studies have suggested that drugs such as nonsteroidal anti-inflammatory drugs (NSAIDs) might help slow the progression of AD, but clinical trials thus far have not demonstrated a benefit from these drugs. A clinical trial studying two of these drugs, rofecoxib (Vioxx) and naproxen (Aleve) showed that they did not delay the progression of AD in people who already have the disease. Another trial, testing whether the NSAIDs celecoxib (Celebrex) and naproxen could prevent AD in healthy older people at risk of the disease was suspended due to concerns over possible cardiovascular risk. Researchers are continuing to look for ways to test how other anti-inflammatory drugs might affect the development or progression of AD.

Antioxidants. Several years ago, a clinical trial showed that vitamin E slowed the progress of some consequences of AD by about 7 months. Additional studies are investigating whether antioxidants—vitamins E and C—can slow AD. Another clinical trial is examining whether vitamin E and/or selenium supplements can prevent AD or cognitive decline, and additional studies on other antioxidants are ongoing or being planned, including a study of the antioxidant treatments—vitamins E, C, alpha-lipoic acid, and coenzyme Q—in patients with mild to moderate AD.

Ginkgo biloba. Early studies suggested that extracts from the leaves of the ginkgo biloba tree may be of some help in treating AD symptoms. There is no evidence yet that ginkgo biloba will cure or prevent AD, but scientists now are trying to find out in a clinical trial whether ginkgo biloba can delay cognitive decline or prevent dementia in older people.

Estrogen. Some studies have suggested that estrogen used by women to treat the symptoms of menopause also protects the brain. Experts also wondered whether using estrogen could reduce the risk of AD or slow the disease. Clinical trials to test estrogen, however, have not shown that estrogen can slow the progression of already diagnosed AD. And one study found that women over the age of 65 who used estrogen with a progestin were at greater risk of dementia, including AD, and that older women using only estrogen could also increase their chance of developing dementia.

Scientists believe that more research is needed to find out if estrogen may play some role in AD. They would like to know whether starting estrogen therapy around the time of menopause, rather than at age 65 or older, will protect memory or prevent AD.
Participating in Clinical Trials
People with AD, those with MCI, or those with a family history of AD, who want to help scientists test possible treatments may be able to take part in clinical trials. Healthy people also can help scientists learn more about the brain and AD. The NIA maintains the AD Clinical Trials Database, which lists AD clinical trials sponsored by the Federal government and private companies. To find out more about these studies, contact the NIA’s ADEAR Center at 1-800-438-4380 or visit the ADEAR Center website at www.nia.nih.gov/Alzheimers/ResearchInformation/ClinicalTrials. You also can sign up for e-mail alerts on new clinical trials as they are added to the database. Additional clinical trials information is available at www.clinicaltrials.gov.

Many of these studies are being done at NIA-supported Alzheimer’s Disease Centers located throughout the United States. These centers carry out a wide range of research, including studies of the causes, diagnosis, treatment, and management of AD. To get a list of these centers, contact the ADEAR Center.

Advancing Our Understanding
Scientists have come a long way in their understanding of AD. Findings from years of research have begun to clarify differences between normal age-related memory changes, MCI, and AD. Scientists also have made great progress in defining the changes that take place in the AD brain, which allows them to pinpoint possible targets for treatment.
These advances are the foundation for the NIH Alzheimer’s Disease Prevention Initiative, which is designed to:

understand why AD occurs and who is at greatest risk of developing it,
improve the accuracy of diagnosis and the ability to identify those at risk,
discover, develop, and test new treatments, and
discover treatments for behavioral problems in patients with AD.

Is There Help for Caregivers?
Most often, spouses and other family members provide the day-to-day care for people with AD. As the disease gets worse, people often need more and more care. This can be hard for caregivers and can affect their physical and mental health, family life, job, and finances.

The Alzheimer’s Association has chapters nationwide that provide educational programs and support groups for caregivers and family members of people with AD. Contact information for the Alzheimer’s Association is listed at the end of this fact sheet.

Q. What is the Multimodal Treatment Study of Children with ADHD?

A. The Multimodal Treatment Study of Children with ADHD–“MTA” for short–brought together 18 nationally recognized authorities in ADHD at 6 different university medical centers and hospitals to evaluate the leading treatments for ADHD, including various forms of behavior therapy and medications. The study has included nearly 600 elementary school children, ages 7-9, randomly assigned to one of four treatment modes: (1) medication alone; (2) psychosocial/behavioral treatment alone; (3) a combination of both; or (4) routine community care.

Q. Why is this study important?

A. ADHD is a major public health problem of great interest to many parents, teachers, and health care providers. Up-to-date information concerning the long-term safety and comparative effectiveness of its treatments is urgently needed. While previous studies have examined the safety and compared the effectiveness of the two major forms of treatment, medication and behavior therapy, these studies generally have been limited to periods up to 4 months. The MTA study demonstrates for the first time the safety and relative effectiveness of these two treatments (including a behavioral therapy-only group), alone and in combination, for a time period up to 14 months, and compares these treatments to routine community care. The children involved in the study will be tracked into adolescence to document and evaluate long-term outcomes.

Q. What are the major findings of this study so far?

A. The MTA results published in December 1999 indicate that long-term combination treatments as well as medication-management alone are both significantly superior to intensive behavioral treatments and routine community treatments in reducing ADHD symptoms. The study also shows that these differential benefits extend as long as 14 months. In other areas of functioning (specifically anxiety symptoms, academic performance, oppositionality, parent-child relations, and social skills), the combined treatment approach was consistently superior to routine community care, whereas the single treatments (medication-only or behavioral treatment only) were not. In addition to the advantages provided by the combined treatment for several outcomes, this form of treatment allowed children to be successfully treated over the course of the study with somewhat lower doses of medication, compared to the medication-only group. These same findings were replicated across all six research sites, despite substantial differences among sites in their samples’ sociodemographic characteristics. Therefore, the study’s overall results appear to be applicable and generalizable to a wide range of children and families in need of treatment services for ADHD.

Q. Given the effectiveness of medication management, what is the role and need for behavioral therapy?

A. As noted in the NIH ADHD Consensus Conference in November 1998, several decades of research have amply demonstrated that behavioral therapies are quite effective. What the MTA study has demonstrated is that on average, carefully monitored medication management with monthly follow-up is more effective than intensive behavioral treatment for ADHD symptoms, for periods lasting as long as 14 months. All children tended to improve over the course of the study, but they differed in the relative amount of improvement, with the carefully done medication management approaches generally showing the greatest improvement. Nonetheless, children’s responses varied enormously, and some children clearly did very well in each of the treatment groups. For some outcomes that are important in the daily functioning of these children (e.g., academic performance, familial relations), the combination of behavioral therapy and medication was necessary to produce improvements better than community care. Of note, families and teachers reported somewhat higher levels of consumer satisfaction for those treatments that included the behavioral therapy components. Therefore, medication alone is not necessarily the best treatment for every child, and families often need to pursue other treatments, either alone or in combination with medication.

Q. Which treatment is right for my child?

A. This is a critical question that must be answered by each family in consultation with their health care professional. For children with ADHD, no single treatment is the answer for every child; a number of factors appear to be involved in determining which treatments are best for which children. For example, even if a particular treatment might be effective in a given instance, the child may have unacceptable side effects or other life circumstances that might prevent that particular treatment from being used. Furthermore, findings indicate that children with other accompanying problems, such as co-occurring anxiety or high levels of family stressors, may do best with approaches that combine both treatment components, (i.e., medication management and intensive behavioral therapy). In developing suitable treatments for ADHD, each child’s needs, personal and medical history, research findings, and other relevant factors need to be carefully considered.

Q. Why do many social skills improve with medication?

A. This question highlights one of the surprise findings of the study: although it has long been generally assumed that the development of new abilities in children with ADHD (e.g., social skills, enhanced cooperation with parents) often requires the explicit teaching of such skills, the MTA study findings suggest that many children can often acquire these abilities when given the opportunity. Children treated with effective medication management (either alone or in combination with intensive behavioral therapy) manifested substantially greater improvements in social skills and peer relations than children in the community comparison group after 14 months. This important finding indicates that symptoms of ADHD may interfere with their learning of specific social skills. It appears that medication management may benefit many children in areas not previously well known to be salient medication targets, in part by diminishing symptoms that had previously interfered with the child’s social development.

Q. Why were the MTA medication treatments more effective than community treatments that also usually included medication?

A. There were substantial differences between the study-provided medication treatments and those provided in the community, differences mostly related to the quality and intensity of the medication management treatment. During the first month of treatment, special care was taken to find an optimal dose of medication for each child receiving the MTA medication treatment. After this period, these children were seen monthly for one-half hour at each visit. During the treatment visits, the MTA prescribing therapist spoke with the parent, met with the child, and sought to determine any concerns that the family might have regarding the medication or the child’s ADHD-related difficulties. If the child was experiencing any difficulties, the MTA physician was encouraged to consider adjustments in the child’s medication (rather than taking a “wait and see” approach). The goal was always to obtain such substantial benefit that there was “no room for improvement” compared with the functioning of children not suffering from ADHD. Close supervision also fostered early detection and response to any problematic side effects from medication, a process that may have facilitated efforts to help children remain on effective treatment. In addition, the MTA physicians sought input from the teacher on a monthly basis, and used this information to make any necessary adjustments in the child’s treatment. While the physicians in the MTA medication-only group did not provide behavioral therapy, they did advise the parents when necessary concerning any problems the child may have been experiencing, and provided reading materials and additional information as requested. Physicians delivering the MTA medication treatments generally used 3 doses per day and somewhat higher doses of stimulant medications. In comparison, the community-treatment physician generally saw the children face-to-face only 1-2 times per year, and for shorter periods of time each visit. Furthermore, they did not have any interaction with the teachers, and prescribed lower doses and twice-daily stimulant medication.

Q. How were children selected for this study?

A. In all instances, the child’s parents contacted the investigators to learn more about the study, after first hearing about it through local pediatricians, other health care providers, elementary school teachers, or radio/newspaper announcements. Children and parents were then carefully interviewed to learn more about the nature of the child’s symptoms, and rule out the presence of other conditions or factors that may have given rise to the child’s difficulties. In addition, extensive historical information was gathered and diagnostic interviews were conducted to establish whether or not the child exhibited the long-standing pattern of symptoms characteristic of ADHD across home, school, and peer settings. If children met full criteria for ADHD and study entry (and many did not), informed parental consent with child assent and school permission were received; the children and families then were eligible for study entry and randomization. Children who had behavior problems but not ADHD were not eligible for study participation.

Q. Where is this study taking place?

A. Research sites include:

• New York State Psychiatric Institute at Columbia University, New York, N.Y.
• Mount Sinai Medical Center, New York, N.Y.
• Duke University Medical Center, Durham, N.C.
• University of Pittsburgh, Pittsburgh, PA.
• Long Island Jewish Medical Center, New Hyde Park, N.Y.
• Montreal Children’s Hospital, Montreal, Canada
• University of California at Berkeley, CA.
• University of California at Irvine, CA.

If you have any specific question, you can ask the doctors at www.mymedexpert.com

Medication can help the ADHD child in everyday life. He or she may be better able to control some of the behavior problems that have led to trouble with parents and siblings. But it takes time to undo the frustration, blame, and anger that may have gone on for so long. Both parents and children may need special help to develop techniques for managing the patterns of behavior. In such cases, mental health professionals can counsel the child and the family, helping them to develop new skills, attitudes, and ways of relating to each other. In individual counseling, the therapist helps children with ADHD learn to feel better about themselves. The therapist can also help them to identify and build on their strengths, cope with daily problems, and control their attention and aggression. Sometimes only the child with ADHD needs counseling support. But in many cases, because the problem affects the family as a whole, the entire family may need help. The therapist assists the family in finding better ways to handle the disruptive behaviors and promote change. If the child is young, most of the therapist’s work is with the parents, teaching them techniques for coping with and improving their child’s behavior.

Several intervention approaches are available. Knowing something about the various types of interventions makes it easier for families to choose a therapist that is right for their needs.

Psychotherapy works to help people with ADHD to like and accept themselves despite their disorder. It does not address the symptoms or underlying causes of the disorder. In psychotherapy, patients talk with the therapist about upsetting thoughts and feelings, explore self-defeating patterns of behavior, and learn alternative ways to handle their emotions. As they talk, the therapist tries to help them understand how they can change or better cope with their disorder.

Behavioral therapy (BT) helps people develop more effective ways to work on immediate issues. Rather than helping the child understand his or her feelings and actions, it helps directly in changing their thinking and coping and thus may lead to changes in behavior. The support might be practical assistance, like help in organizing tasks or schoolwork or dealing with emotionally charged events. Or the support might be in self-monitoring one’s own behavior and giving self-praise or rewards for acting in a desired way such as controlling anger or thinking before acting.

Social skills training can also help children learn new behaviors. In social skills training, the therapist discusses and models appropriate behaviors important in developing and maintaining social relationships, like waiting for a turn, sharing toys, asking for help, or responding to teasing, then gives children a chance to practice. For example, a child might learn to “read” other people’s facial expression and tone of voice in order to respond appropriately. Social skills training helps the child to develop better ways to play and work with other children.

Support groups help parents connect with other people who have similar problems and concerns with their ADHD children. Members of support groups often meet on a regular basis (such as monthly) to hear lectures from experts on ADHD, share frustrations and successes, and obtain referrals to qualified specialists and information about what works. There is strength in numbers, and sharing experiences with others who have similar problems helps people know that they aren’t alone. National organizations are listed at the end of this document.

Parenting skills training, offered by therapists or in special classes, gives parents tools and techniques for managing their child’s behavior. One such technique is the use of token or point systems for immediately rewarding good behavior or work. Another is the use of “time-out” or isolation to a chair or bedroom when the child becomes too unruly or out of control. During time-outs, the child is removed from the agitating situation and sits alone quietly for a short time to calm down. Parents may also be taught to give the child “quality time” each day, in which they share a pleasurable or relaxing activity. During this time together, the parent looks for opportunities to notice and point out what the child does well, and praise his or her strengths and abilities.

This system of rewards and penalties can be an effective way to modify a child’s behavior. The parents (or teacher) identify a few desirable behaviors that they want to encourage in the child—such as asking for a toy instead of grabbing it, or completing a simple task. The child is told exactly what is expected in order to earn the reward. The child receives the reward when he performs the desired behavior and a mild penalty when he doesn’t. A reward can be small, perhaps a token that can be exchanged for special privileges, but it should be something the child wants and is eager to earn. The penalty might be removal of a token or a brief time-out. Make an effort to find your child being good. The goal, over time, is to help children learn to control their own behavior and to choose the more desired behavior. The technique works well with all children, although children with ADHD may need more frequent rewards.

In addition, parents may learn to structure situations in ways that will allow their child to succeed. This may include allowing only one or two playmates at a time, so that their child doesn’t get overstimulated. Or if their child has trouble completing tasks, they may learn to help the child divide a large task into small steps, then praise the child as each step is completed. Regardless of the specific technique parents may use to modify their child’s behavior, some general principles appear to be useful for most children with ADHD. These include providing more frequent and immediate feedback (including rewards and punishment), setting up more structure in advance of potential problem situations, and providing greater supervision and encouragement to children with ADHD in relatively unrewarding or tedious situations.

Parents may also learn to use stress management methods, such as meditation, relaxation techniques, and exercise, to increase their own tolerance for frustration so that they can respond more calmly to their child’s behavior.

Some Simple Behavioral Interventions

Children with ADHD may need help in organizing. Therefore:

• Schedule. Have the same routine every day, from wake-up time to bedtime. The schedule should include homework time and playtime (including outdoor recreation and indoor activities such as computer games). Have the schedule on the refrigerator or a bulletin board in the kitchen. If a schedule change must be made, make it as far in advance as possible.
• Organize needed everyday items. Have a place for everything and keep everything in its place. This includes clothing, backpacks, and school supplies.
• Use homework and notebook organizers. Stress the importance of writing down assignments and bringing home needed books.

Children with ADHD need consistent rules that they can understand and follow. If rules are followed, give small rewards. Children with ADHD often receive, and expect, criticism. Look for good behavior and praise it.

Your ADHD Child and School

You are your child’s best advocate. To be a good advocate for your child, learn as much as you can about ADHD and how it affects your child at home, in school, and in social situations.

If your child has shown symptoms of ADHD from an early age and has been evaluated, diagnosed, and treated with either behavior modification or medication or a combination of both, when your child enters the school system, let his or her teachers know. They will be better prepared to help the child come into this new world away from home.

If your child enters school and experiences difficulties that lead you to suspect that he or she has ADHD, you can either seek the services of an outside professional or you can ask the local school district to conduct an evaluation. Some parents prefer to go to a professional of their own choice. But it is the school’s obligation to evaluate children that they suspect have ADHD or some other disability that is affecting not only their academic work but their interactions with classmates and teachers.

If you feel that your child has ADHD and isn’t learning in school as he or she should, you should find out just who in the school system you should contact. Your child’s teacher should be able to help you with this information. Then you can request—in writing—that the school system evaluate your child. The letter should include the date, your and your child’s names, and the reason for requesting an evaluation. Keep a copy of the letter in your own files.

Until the last few years, many school systems were reluctant to evaluate a child with ADHD. But recent laws have made clear the school’s obligation to the child suspected of having ADHD that is affecting adversely his or her performance in school. If the school persists in refusing to evaluate your child, you can either get a private evaluation or enlist some help in negotiating with the school. Help is often as close as a local parent group. Each state has a Parent Training and Information (PTI) center as well as a Protection and Advocacy (P&A) agency. (For information on the law and on the PTI and P&A, see the section on support groups and organizations at the end of this document.)

Once your child has been diagnosed with ADHD and qualifies for special education services, the school, working with you, must assess the child’s strengths and weaknesses and design an Individualized Educational Program (IEP). You should be able periodically to review and approve your child’s IEP. Each school year brings a new teacher and new schoolwork, a transition that can be quite difficult for the child with ADHD. Your child needs lots of support and encouragement at this time.

Never forget the cardinal rule—you are your child’s best advocate.

Your Teenager with ADHD

Your child with ADHD has successfully navigated the early school years and is beginning his or her journey through middle school and high school. Although your child has been periodically evaluated through the years, this is a good time to have a complete re-evaluation of your child’s health.

The teen years are challenging for most children; for the child with ADHD these years are doubly hard. All the adolescent problems—peer pressure, the fear of failure in both school and socially, low self-esteem—are harder for the ADHD child to handle. The desire to be independent, to try new and forbidden things—alcohol, drugs, and sexual activity—can lead to unforeseen consequences. The rules that once were, for the most part, followed, are often now flaunted. Parents may not agree with each other on how the teenager’s behavior should be handled.

Now, more than ever, rules should be straightforward and easy to understand. Communication between the adolescent and parents can help the teenager to know the reasons for each rule. When a rule is set, it should be clear why the rule is set. Sometimes it helps to have a chart, posted usually in the kitchen, that lists all household rules and all rules for outside the home (social and school). Another chart could list household chores with space to check off a chore once it is done.

When rules are broken—and they will be—respond to this inappropriate behavior as calmly and matter-of-factly as possible. Use punishment sparingly. Even with teens, a time-out can work. Impulsivity and hot temper often accompany ADHD. A short time alone can help.

As the teenager spends more time away from home, there will be demands for a later curfew and the use of the car. Listen to your child’s request, give reasons for your opinion and listen to his or her opinion, and negotiate. Communication, negotiation, and compromise will prove helpful.

Your Teenager and the Car.

Teenagers, especially boys, begin talking about driving by the time they are 15. In some states, a learner’s permit is available at 15 and a driver’s license at 16. Statistics show that 16-year-old drivers have more accidents per driving mile than any other age. In the year 2000, 18 percent of those who died in speed-related crashes were youth ages 15 to 19. Sixty-six percent of these youth were not wearing safety belts. Youth with ADHD, in their first 2 to 5 years of driving, have nearly four times as many automobile accidents, are more likely to cause bodily injury in accidents, and have three times as many citations for speeding as the young drivers without ADHD.¹⁴

Most states, after looking at the statistics for automobile accidents involving teenage drivers, have begun to use a graduated driver licensing system (GDL). This system eases young drivers onto the roads by a slow progression of exposure to more difficult driving experiences. The program, as developed by the National Highway Traffic Safety Administration and the American Association of Motor Vehicle Administrators, consists of three stages: learner’s permit, intermediate (provisional) license, and full licensure. Drivers must demonstrate responsible driving behavior at each stage before advancing to the next level. During the learner’s permit stage, a licensed adult must be in the car at all times.¹⁵ This period of time will give the learner a chance to practice, practice, practice. The more your child drives, the more efficient he or she will become. The sense of accomplishment the teenager with ADHD will feel when the coveted license is finally in his or her hands will make all the time and effort involved worthwhile.

If you have any specific question, you can ask the doctors at www.mymedexpert.com

Every family wants to determine what treatment will be most effective for their child. This question needs to be answered by each family in consultation with their health care professional. To help families make this important decision, the National Institute of Mental Health (NIMH) has funded many studies of treatments for ADHD and has conducted the most intensive study ever undertaken for evaluating the treatment of this disorder. This study is known as the Multimodal Treatment Study of Children with Attention Deficit Hyperactivity Disorder (MTA).¹² The NIMH is now conducting a clinical trial for younger children ages 3 to 5.5 years (Treatment of ADHD in Preschool-Age Children).

The Multimodal Treatment Study of Children with Attention Deficit Hyperactivity Disorder

The MTA study included 579 (95-98 at each of 6 treatment sites) elementary school boys and girls with ADHD, who were randomly assigned to one of four treatment programs: (1) medication management alone; (2) behavioral treatment alone; (3) a combination of both; or (4) routine community care. In each of the study sites, three groups were treated for the first 14 months in a specified protocol and the fourth group was referred for community treatment of the parents’ choosing. All of the children were reassessed regularly throughout the study period. An essential part of the program was the cooperation of the schools, including principals and teachers. Both teachers and parents rated the children on hyperactivity, impulsivity, and inattention, and symptoms of anxiety and depression, as well as social skills.

The children in two groups (medication management alone and the combination treatment) were seen monthly for one-half hour at each medication visit. During the treatment visits, the prescribing physician spoke with the parent, met with the child, and sought to determine any concerns that the family might have regarding the medication or the child’s ADHD-related difficulties. The physicians, in addition, sought input from the teachers on a monthly basis. The physicians in the medication-only group did not provide behavioral therapy but did advise the parents when necessary concerning any problems the child might have.

In the behavior treatment-only group, families met up to 35 times with a behavior therapist, mostly in group sessions. These therapists also made repeated visits to schools to consult with children’s teachers and to supervise a special aide assigned to each child in the group. In addition, children attended a special 8-week summer treatment program where they worked on academic, social, and sports skills, and where intensive behavioral therapy was delivered to assist children in improving their behavior.

Children in the combined therapy group received both treatments, that is, all the same assistance that the medication-only received, as well as all of the behavior therapy treatments.

In routine community care, the children saw the community-treatment doctor of their parents’ choice one to two times per year for short periods of time. Also, the community-treatment doctor did not have any interaction with the teachers.

The results of the study indicated that long-term combination treatments and the medication-management alone were superior to intensive behavioral treatment and routine community treatment. And in some areas—anxiety, academic performance, oppositionality, parent-child relations, and social skills—the combined treatment was usually superior. Another advantage of combined treatment was that children could be successfully treated with lower doses of medicine, compared with the medication-only group.

Treatment of Attention Deficit Hyperactivity Disorder in Preschool-Age Children (PATS)

Because many children in the preschool years are diagnosed with ADHD and are given medication, it is important to know the safety and efficacy of such treatment. The NIMH is sponsoring an ongoing multi-site study, “Preschool ADHD Treatment Study” (PATS). It is the first major effort to examine the safety and efficacy of a stimulant, methylphenidate, for ADHD in this age group. The PATS study uses a randomized, placebo-controlled, double-blind design. Children ages 3 to 5 who have severe and persistent symptoms of ADHD that impair their functioning are eligible for this study. To avoid using medications at such an early age, all children who enter the study are first treated with behavioral therapy. Only children who do not show sufficient improvement with behavior therapy are considered for the medication part of the study. The study is being conducted at New York State Psychiatric Institute, Duke University, Johns Hopkins University, New York University, the University of California at Los Angeles, and the University of California at Irvine. Enrollment in the study will total 165 children.

Which Treatment Should My Child Have?

For children with ADHD, no single treatment is the answer for every child. A child may sometimes have undesirable side effects to a medication that would make that particular treatment unacceptable. And if a child with ADHD also has anxiety or depression, a treatment combining medication and behavioral therapy might be best. Each child’s needs and personal history must be carefully considered.

Medications

For decades, medications have been used to treat the symptoms of ADHD.

The medications that seem to be the most effective are a class of drugs known as stimulants. Following is a list of the stimulants, their trade (or brand) names, and their generic names. “Approved age” means that the drug has been tested and found safe and effective in children of that age.

Some people get better results from one medication, some from another. It is important to work with the prescribing physician to find the right medication and the right dosage. For many people, the stimulants dramatically reduce their hyperactivity and impulsivity and improve their ability to focus, work, and learn. The medications may also improve physical coordination, such as that needed in handwriting and in sports.

The stimulant drugs, when used with medical supervision, are usually considered quite safe. Stimulants do not make the child feel “high,” although some children say they feel different or funny. Such changes are usually very minor. Although some parents worry that their child may become addicted to the medication, to date there is no convincing evidence that stimulant medications, when used for treatment of ADHD, cause drug abuse or dependence. A review of all long-term studies on stimulant medication and substance abuse, conducted by researchers at Massachusetts General Hospital and Harvard Medical School, found that teenagers with ADHD who remained on their medication during the teen years had a lower likelihood of substance use or abuse than did ADHD adolescents who were not taking medications.¹³

The stimulant drugs come in long- and short-term forms. The newer sustained-release stimulants can be taken before school and are long-lasting so that the child does not need to go to the school nurse every day for a pill. The doctor can discuss with the parents the child’s needs and decide which preparation to use and whether the child needs to take the medicine during school hours only or in the evening and on weekends too.

If the child does not show symptom improvement after taking a medication for a week, the doctor may try adjusting the dosage. If there is still no improvement, the child may be switched to another medication. About one out of ten children is not helped by a stimulant medication. Other types of medication may be used if stimulants don’t work or if the ADHD occurs with another disorder. Antidepressants and other medications can help control accompanying depression or anxiety.

Sometimes the doctor may prescribe for a young child a medication that has been approved by the FDA for use in adults or older children. This use of the medication is called “off label.” Many of the newer medications that are proving helpful for child mental disorders are prescribed off label because only a few of them have been systematically studied for safety and efficacy in children. Medications that have not undergone such testing are dispensed with the statement that “safety and efficacy have not been established in pediatric patients.”

Side Effects of the Medications

Most side effects of the stimulant medications are minor and are usually related to the dosage of the medication being taken. Higher doses produce more side effects. The most common side effects are decreased appetite, insomnia, increased anxiety, and/or irritability. Some children report mild stomach aches or headaches.

Appetite seems to fluctuate, usually being low during the middle of the day and more normal by suppertime. Adequate amounts of food that is nutritional should be available for the child, especially at peak appetite times.

If the child has difficulty falling asleep, several options may be tried—a lower dosage of the stimulant, giving the stimulant earlier in the day, discontinuing the afternoon or evening dosage, or giving an adjunct medication such as a low-dosage antidepressant or clonidine. A few children develop tics during treatment. These can often be lessened by changing the medication dosage. A very few children cannot tolerate any stimulant, no matter how low the dosage. In such cases, the child is often given an antidepressant instead of the stimulant.

When a child’s schoolwork and behavior improve soon after starting medication, the child, parents, and teachers tend to applaud the drug for causing the sudden changes. Unfortunately, when people see such immediate improvement, they often think medication is all that’s needed. But medications don’t cure ADHD; they only control the symptoms on the day they are taken. Although the medications help the child pay better attention and complete school work, they can’t increase knowledge or improve academic skills. The medications help the child to use those skills he or she already possesses.

Behavioral therapy, emotional counseling, and practical support will help ADHD children cope with everyday problems and feel better about themselves.

Facts to Remember About Medication for ADHD

• Medications for ADHD help many children focus and be more successful at school, home, and play. Avoiding negative experiences now may actually help prevent addictions and other emotional problems later.
• About 80 percent of children who need medication for ADHD still need it as teenagers. Over 50 percent need medication as adults.

Medication for the Child with Both ADHD and Bipolar Disorder

Since a child with bipolar disorder will probably be prescribed a mood stabilizer such as lithium or Depakote®, the doctor will carefully consider whether the child should take one of the medications usually prescribed for ADHD. If a stimulant medication is prescribed, it may be given in a lower dosage than usual.

Learning Disabilities

Many children with ADHD—approximately 20 to 30 percent—also have a specific learning disability (LD).¹⁰ In preschool years, these disabilities include difficulty in understanding certain sounds or words and/or difficulty in expressing oneself in words. In school age children, reading or spelling disabilities, writing disorders, and arithmetic disorders may appear. A type of reading disorder, dyslexia, is quite widespread. Reading disabilities affect up to 8 percent of elementary school children.

Tourette Syndrome

A very small proportion of people with ADHD have a neurological disorder called Tourette syndrome. People with Tourette syndrome have various nervous tics and repetitive mannerisms, such as eye blinks, facial twitches, or grimacing. Others may clear their throats frequently, snort, sniff, or bark out words. These behaviors can be controlled with medication. While very few children have this syndrome, many of the cases of Tourette syndrome have associated ADHD. In such cases, both disorders often require treatment that may include medications.

Oppositional Defiant Disorder

As many as one-third to one-half of all children with ADHD—mostly boys—have another condition, known as oppositional defiant disorder (ODD). These children are often defiant, stubborn, non-compliant, have outbursts of temper, or become belligerent. They argue with adults and refuse to obey.

Conduct Disorder

About 20 to 40 percent of ADHD children may eventually develop conduct disorder (CD), a more serious pattern of antisocial behavior. These children frequently lie or steal, fight with or bully others, and are at a real risk of getting into trouble at school or with the police. They violate the basic rights of other people, are aggressive toward people and/or animals, destroy property, break into people’s homes, commit thefts, carry or use weapons, or engage in vandalism. These children or teens are at greater risk for substance use experimentation, and later dependence and abuse. They need immediate help.

Anxiety and Depression

Some children with ADHD often have co-occurring anxiety or depression. If the anxiety or depression is recognized and treated, the child will be better able to handle the problems that accompany ADHD. Conversely, effective treatment of ADHD can have a positive impact on anxiety as the child is better able to master academic tasks.

Bipolar Disorder

There are no accurate statistics on how many children with ADHD also have bipolar disorder. Differentiating between ADHD and bipolar disorder in childhood can be difficult. In its classic form, bipolar disorder is characterized by mood cycling between periods of intense highs and lows. But in children, bipolar disorder often seems to be a rather chronic mood dysregulation with a mixture of elation, depression, and irritability. Furthermore, there are some symptoms that can be present both in ADHD and bipolar disorder, such as a high level of energy and a reduced need for sleep. Of the symptoms differentiating children with ADHD from those with bipolar disorder, elated mood and grandiosity of the bipolar child are distinguishing characteristics.¹¹

Some survivors of cancer experience trauma-related symptoms similar to symptoms experienced by people who have survived highly stressful situations, such as military combat, natural disasters, violent personal attack (such as rape), or other life-threatening events. This group of symptoms is called posttraumatic stress disorder (PTSD) and includes avoiding situations related to the trauma, continuously thinking of the trauma, and being overexcited.

People with histories of cancer are considered to be at risk for PTSD. The physical and mental shock of having a life-threatening disease, of receiving treatment for cancer, and living with repeated threats to one’s body and life are traumatic experiences for many cancer patients.

Posttraumatic stress disorder (PTSD) is defined as the development of certain symptoms following a mentally stressful event that involved actual death or the threat of death, serious injury, or a threat to oneself or others. For the person who has experienced a diagnosis of cancer, the specific trauma that triggers PTSD is unclear. It may be the actual diagnosis of a life-threatening illness, aspects of the treatment process, test results, information given about recurrence, or some other aspect of the cancer experience. Learning that one’s child has cancer is traumatic for many parents. Because the cancer experience involves so many upsetting events, it is much more difficult to single out one event as a cause of stress than it is for other traumas, such as natural disasters or rape. The traumatic event may cause responses of extreme fear, helplessness, or horror and may trigger PTSD symptoms.

PTSD in cancer survivors may be expressed in these specific behaviors:

* Reliving the cancer experience in nightmares or flashbacks and by continuously thinking about it.
* Avoiding places, events, and people connected to the cancer experience.
* Being continuously overexcited, fearful, irritable, and unable to sleep.

To be diagnosed as PTSD, these symptoms must last for at least one month and cause significant problems in the patient’s personal relationships, employment, or other important areas of daily life. Patients who have these symptoms for less than one month often develop PTSD later.

Risk Factors, Protective Factors, and the Development of PTSD

Individual and social factors
Disease-related factors
Mental factors
Protective factors
How PTSD may develop

As many as one third of people who experience an extremely upsetting event, including cancer, develop posttraumatic stress disorder (PTSD). The event alone does not explain why some people get PTSD and others don’t. Although there is no clear answer as to which cancer survivors are at increased risk of developing PTSD, certain mental, physical, or social factors may make some people more likely to experience it.

Individual and social factors

Individual and social factors that have been associated with a higher incidence of PTSD include younger age, fewer years of formal education, and lower income.

Disease-related factors

Certain disease-related factors are associated with PTSD:

* In patients who received a bone marrow transplant, PTSD occurs more often when there is advanced disease and a longer hospital stay.
* In adult survivors of bone cancer and Hodgkin lymphoma, people for whom more time has passed since diagnosis and treatment tended to show fewer symptoms.
* In survivors of childhood cancer, symptoms of PTSD occur more often when there was a longer treatment time.
* Interfering thoughts occur more often in patients who experienced pain and other physical symptoms.
* Cancer that has returned has been shown to increase stress symptoms in patients.

Mental factors

Mental factors may affect the development of PTSD in some patients:

* Previous trauma.
* Previous psychological problems.
* High level of general stress.
* Genetic factors and biological factors (such as a hormone disorder) that affect memory and learning.
* The amount of social support available.
* Threat to life and body.
* Having PTSD before being diagnosed with cancer.
* The use of avoidance to cope with stress.

Protective factors

Certain factors may decrease a person’s chance of developing PTSD. These include increased social support, accurate information about the stage of the cancer, and a satisfactory relationship with the medical staff.

How PTSD may develop

PTSD symptoms develop by both conditioning and learning. Conditioning explains the fear responses caused by certain triggers that were first associated with the upsetting event. Neutral triggers (such as smells, sounds, and sights) that occurred at the same time as upsetting triggers (such as chemotherapy or painful treatments) later cause anxiety, stress, and fear even when they occur alone, after the trauma has ended. Once established, PTSD symptoms are continued through learning. The patient learns that avoiding the triggers prevents unpleasant feelings and thoughts, so coping by avoidance continues.

Although conditioning and learning are part of the process, many factors may explain why one person develops PTSD and another does not.

Assessment

It is important that cancer patients undergo a careful assessment for posttraumatic stress disorder (PTSD) so that early symptoms may be identified and treated. The timing of this assessment will vary with the individual patient. Cancer is an experience of repeated traumas and undetermined length. The patient may experience stress symptoms anytime from diagnosis through completion of treatment and cancer recurrence. In patients who have a history of victimization (such as Holocaust survivors) and who have PTSD or its symptoms from these experiences, symptoms can be started again by certain triggers experienced during their cancer treatment (for example, clinical procedures such as being inside MRI or CT scanners). While these patients may have problems adjusting to cancer and cancer treatment, their PTSD symptoms may vary, depending on other factors. The symptoms may become more or less prevalent during and after the cancer treatment.

Symptoms of PTSD usually begin within the first 3 months after the trauma, but sometimes they do not appear for months or even years afterwards. Therefore, cancer survivors and their families should be involved in long-term monitoring.

Some people who have experienced an upsetting event may show early symptoms without meeting the full diagnosis of PTSD. However, these early symptoms predict that PTSD may develop later. Early symptoms also indicate the need for repeated and long-term follow-up of cancer survivors and their families.

Diagnosing PTSD can be difficult since many of the symptoms are similar to other psychiatric problems. For example, irritability, poor concentration, increased defensiveness, excessive fear, and disturbed sleep are symptoms of both PTSD and anxiety disorder. Other symptoms are common to PTSD, phobias, and panic disorder. Some symptoms, such as loss of interest, a sense of having no future, avoidance of other people, and sleep problems may indicate the patient has PTSD or depression. Even without PTSD or other problems, normal reactions to the cancer diagnosis and treatment of a life-threatening disease can include interfering thoughts, separating from people and the world, sleep problems, and over-excitability.

Questionnaires and interviews are used by health care providers to assess if the patient has symptoms of stress and to determine the diagnosis.

Other problems may also exist in addition to PTSD. These problems can include substance abuse, emotional problems, and other anxiety disorders, including major depression, alcohol dependence, drug dependence, social fears, and/or obsessive-compulsive disorder.

Treatment

Effects of posttraumatic stress disorder (PTSD) are long-lasting and serious. It may affect the patient’s ability to have a normal lifestyle and may interfere with personal relationships, education, and employment. Because avoiding places and persons associated with cancer is part of PTSD, the syndrome may prevent the patient from seeking medical treatment. It is important that cancer survivors receive information about the possible psychological effects of their cancer experience and early treatment of symptoms of PTSD. Therapies used to treat PTSD are those used for other trauma victims. Treatment may involve more than one type of therapy.

The crisis intervention method tries to lessen the symptoms and return the patient to a normal level of functioning. The therapist focuses on solving problems, teaching coping skills, and providing a supportive setting for the patient.

Some patients are helped by methods that teach them to change their behaviors by changing their thinking patterns. Some of these methods include helping the patient understand symptoms, teaching coping and stress management skills (such as relaxation training), teaching the patient to reword upsetting thoughts, and helping the patient become less sensitive to upsetting triggers. Behavior therapy is used when the symptoms are avoidance of sexual activity and intimate situations.

Support groups may also help people who experience posttraumatic stress symptoms. In the group setting, patients can receive emotional support, meet others with similar experiences and symptoms, and learn coping and management skills.

For patients with severe symptoms, medications may be used. These include antidepressants, antianxiety medications, and when necessary, antipsychotic medications.

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Like eating well and being physically active, getting a good night’s sleep is vital to your well-being. Not only does the quantity of your sleepmatter, but the quality of your sleep is important as
well. People whose sleep is interrupted a lot or is cutshort might not get enough of certain stages of sleep.In other words, how well rested you are and how well you function the next day depend on your total sleep time and how much of the various stages of sleep you
get each night.

Health: Sleep is also important for good health. Studies show that not getting enough sleep or getting
poor quality sleep on a regular basis increases the risk of having high blood pressure, heart disease, and other medical conditions.In addition, during sleep, your body produces valuable
hormones. Deep sleep triggers more release of growth hormone, which fuels growth in children, and helps build muscle mass and repair cells and tissues in children and adults. Another type of hormone that increases during sleep works to fight various infections. This might explain why a good night’s sleep helps keep you from getting sick—and helps you recover when you do get sick. Hormones released during sleep also affect how the body uses energy. Studies find that the less people sleep, the more likely they are to be overweight or obese, to develop diabetes, and to prefer eating foods that are high in calories and carbohydrates.

Performance: We need sleep to think clearly, react quickly, and create memories. In fact, the pathways in the brain that help us learn and remember are very active when we sleep. Studies show that people who are taught mentally challenging tasks do better after a good night’s sleep. Other research suggests that sleep is needed for creative problem solving.Skimping on sleep has a price. Cutting back by even 1 hour can make it tough to focus the next day and can slow your response time. Studies also find that when you lack sleep, you are more likely to make bad decisions and take more risks. This can result in lower performance on the job or in school and a greater risk for a car crash.

Mood: Sleep also affects mood. Insufficient sleep can make you irritable and is linked to poor behavior and trouble with relationships, especially among children and teens. People who chronically lack sleep are also more likely to become depressed.

Source: National Heart Lung and Blood Institute, National Institutes of Health

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