After diagnosis and treatment for a brain tumor, a person often may not be the same. Changes in behavior and thinking occur in the majority of patients at some point during their treatment. The extent of changes can vary considerably from person to person. Changes can be as subtle as mild forgetfulness or as dramatic as deep depression or abusive, violent outbursts. This article will look at the reasons why behavioral and personality changes occur, and what patients and caregivers can do to cope with them.
What causes behavioral and personality changes?
Tumor location influences the type of symptoms. Here is an example:
While on a sailing trip with his wife Diana, Ray Rosenkaimer suffered a terrible headache. He became too disoriented and confused to continue sailing, and Diana took over the helm. The next morning Ray awoke feeling better and thought everything was fine. Instead, he had a frightening and shocking surprise.
“As I drank my coffee and began to look at the morning paper, I was struck with the horror of not being able to read one word. I could not believe it. The words held no meaning. I looked in my wallet to see if I could recognize myself on any photo ID or at least read my social security number. To my amazement I comprehended nothing. I was unrecognizable to myself. The person sitting across from me at the breakfast table looked somewhat familiar, but I neither knew her nor her name. I thought I had lost my mind.”
A large meningioma, the most common type of primary brain tumor, growing in the left temporal and parietal area severely affected Ray’s memory and language centers. Effects of pressure or “disconnection” of interrelated brain areas can cause problems that might not be expected. The illustration below identifies brain functions and their locations.
- Frontal lobe: Movement, intelligence, reasoning, behavior, memory, personality, planning, decision making, judgment, initiative, inhibition, mood
- Temporal lobe: Speech, behavior, memory, hearing, vision, emotions
- Pituitary gland: Hormones, growth, fertility
- Parietal lobe: Intelligence, reasoning, telling right from left, language, sensation, reading
- Occipital lobe: Vision
- Cerebellum: Balance, coordination, fine muscle control
- Brain stem: Breathing, blood pressure, heartbeat, swallowing
Tumor size and type are other factors. Larger tumors typically cause greater changes in thinking, yet a small tumor in a key language area can result in severe loss of function. Tumors that grow slowly such as pilocytic astrocytomas may not cause as much trouble because the brain has time to adapt to the tumor. However, fast-growing tumors such as glioblastomas put patients more at risk. Likewise, pituitary tumors can have an effect on personality by causing the overproduction or underproduction of hormones. Hormonal imbalances can cause problems with mood, emotions, body weight, and sexual function.
Treatment side effects
Surgery can reduce the pressure and swelling in the brain, which in many cases will alleviate the symptoms.
“Directly after surgery,” explained Ray, “I could recognize myself and my family. My speech improved as well as my reading. It wasn’t 100% but it was great to have some of it back.”
However, surgery can also cause changes. The type of symptoms would depend on the area affected.
Radiation therapy can produce brain swelling (edema), which can cause acute or sudden symptoms including headaches, irritability, and vomiting. After radiation therapy has been completed, many patients experience fatigue. These symptoms can impact a patient’s behavior. Steroids can often counteract the symptoms.
Chemotherapy is known to cause a decline in physical function. Nausea, vomiting, loss of appetite, and anemia can lower one’s energy level. Hair loss can have a negative impact on a person’s self-confidence and ability to socialize.
Chemotherapy can also affect thinking and personality. The term “chemobrain” is being more frequently used to describe this phenomenon. Cognitive and emotional changes reported during and after chemotherapy include memory loss, slowed thinking, reduced attention, anxiety, depression, and fatigue. Biologic therapies such as interferon alpha have been associated with declines in memory, reasoning skills, motor abilities, and mood disturbance. A combination of medication, modifications in behavior, and simple lifestyle adjustments can help the person dealing with these issues and symptoms.
Side effects of medications
Steroids such as dexamethasone (Decadron®) are commonly prescribed to manage edema. Steroids can cause patients to feel anxious, restless, or depressed. In such cases, the doctor may decrease the dosage or may prescribe anti-psychotic medication to control side effects.
Similarly, anti-epileptic drugs (AEDs) can cause unwanted side effects if the doses are too high or too low. AEDs can also react with chemotherapy drugs such as procarbazine and BCNU. These drug interactions can result in sleepiness, depression, confusion, and problems with gait, speech, and vision. Occasionally, symptoms include aggression, insomnia, and psychosis. A doctor may change the dosage or the type of AED to resolve these side effects.
The patient’s reaction to the diagnosis of a life-threatening illness can cause dramatic changes. Emotions may remain close to the surface and result in excessive crying or laughing, anger, or depression.
Troublesome symptoms such as lack of sleep, forgetfulness, and chronic pain can play a role in making things worse by causing irritability and frustration. Sharing feelings with family and friends is essential for any person dealing with a life-threatening illness. Psychological counseling, spiritual help, and support groups can help tremendously. So can anti-depressant medications.
Identify and manage the changes
Discovering the source of the problem is the first step. An excellent way to evaluate changes in brain functioning and to document cognitive strengths and weaknesses is to consult with a neuropsychologist.
A neuropsychologist is a specialist who studies the physical effects of brain injuries on mental abilities. Neuropsychologists conduct a series of paper and pencil or computer-based tests examining memory, thinking speed, attention, concentration, language, motor skills, and mood. The assessment also evaluates the individual’s ability to plan, reason, initiate, and organize (these are called the “executive functions”). Based on the test results, the neuropsychologist can give recommendations for therapies, medications, or strategies to help the person and family adapt to, or make up for, certain losses.
“It’s important for patients and family members to discuss not only prognosis with their physician, but also the impact the tumor may have on thinking and personality given its location within the brain,” advises Anne Kayl, PhD, a neuropsychologist at MD Anderson Cancer Center in Texas. “For most patients and families, this type of discussion can be a big relief. They recognize the changes are a result of something real and the patient realizes he or she isn’t ‘going crazy.’ Once we identify the problems in cognition, we can provide some ways to work around the deficits.”
When choosing a neuropsychologist, it is wise to seek one who has experience specifically with brain tumor patients. This is because brain tumors present differently than other neurological conditions such as stroke or head trauma.
Complications of memory loss
Memory loss is a common brain tumor symptom. Patients and family members often don’t understand why remote memories from years ago remain intact, yet the person can not remember where she puts things, forgets appointments, or keeps repeating the same information over and over again.“The patient isn’t being difficult or careless,” explains Dr. Kayl. “These symptoms are a function of the disease process.”
Dr. Kayl presented a case study that represents a typical experience of mild memory loss compounded by anxiety: Ms. Jones (not her real name) was diagnosed with a left frontal region tumor. She was treated with surgery, radiotherapy, and chemotherapy. Like many individuals diagnosed with a frontal lobe tumor, Ms. Jones reported language and memory problems. She had trouble finding the correct word in conversation and trouble recalling people’s names. Despite these mild impairments, Ms. Jones was fully capable of expressing her thoughts and carrying on an enjoyable conversation.
A neuropsychological evaluation failed to reveal any dramatic changes or decline in her thinking skills. However, it became clear that Ms. Jones was very troubled, self-conscious, and depressed about the changes in her memory skills and speech. She tried to cope by withdrawing from social activities that she used to enjoy. She avoided situations in which her memory loss might become apparent to others. When she found herself in social situations, her anxiety made things worse, creating a cycle of increasing anxiety and increased speech problems.
“Relatively mild cognitive changes were exacerbated by her depression and anxiety,” Dr. Kayl explained. “In such cases, supportive psychotherapy can be extremely helpful. I recommend a type of therapy called cognitive-behavior therapy, or CBT. This type of therapy is aimed at examining the interaction between thinking and behavior.
“Research has shown that this style of direct, problem-focused therapy is very helpful in treating depression and anxiety disorders. For many patients, CBT can be enough. But for some, medications are needed to ‘jump start’ their mood and enable them to become active participants in their treatment.”
With the help of a neuropsychologist, Ms. Jones was able to see how negative thoughts actually made her speech problems worse. Using cognitive-behavior therapy counseling, she developed more effective ways of dealing with her diagnosis. Relaxation training and visualization techniques helped reduce her anxiety. As her ability to manage her symptoms improved, she was able to increase her participation in family activities and community-based events, enhancing her self-confidence and quality of life.
People suffering from memory loss remain as independent as possible by taking advantage of the many excellent tools that can help compensate for problem areas. Devices such as date books, calendars, personal organizers (such as a Palm Pilot), checklists, watch alarms, and weekly pillboxes are useful as reminders. Setting up a routine and sticking to it can help greatly.
For emotional health, patient support groups can provide a welcome outlet to socialize. It helps to talk with others who have similar experiences and can share their triumphs as well as their pain. However, sometimes a person can feel overwhelmed, and a support group is not enough.
Dealing with depression and fatigue
The losses associated with a brain tumor can have a major impact on patients. A person who was the head of the household may lose the ability to work and to handle the family’s financial matters. An independent individual may become unable to drive a car and suddenly find himself totally dependent on others. Such serious losses can lead to frustration, anger, and depression.
Depression is more than normal sadness; it is a medical condition that produces visible symptoms. If left untreated, depression can suppress the immune system and lead to other health problems. Fortunately, depression is usually managed effectively with antidepressant medication. Talk therapy with a mental health counselor can also be of value.
Fatigue can severely limit a person’s ability to function. It can be a side effect of depression. Fatigue can also be a side effect of treatment or a symptom of anemia.
A physician can prescribe stimulants or other medication to combat fatigue. Also, exercise is helpful in restoring energy and overall vitality. It is important to consult with a doctor before starting an exercise regimen. By monitoring their energy levels during the day, patients can choose the times when they have the most energy to do tasks or activities that are more demanding.
Confusion and disorientation
Some patients complain of distractibility and an inability to focus. This can sometimes be caused by overstimulation – too many things going on at the same time. Many people who have had brain surgery have trouble managing multiple bits of information at once. For example, patients are often quite comfortable in one-on-one conversations, but become overwhelmed in group settings.
To handle overstimulation, patients themselves can take stock of what kinds of noises or situations cause the most problems and try to reduce those distractions. For example, ask people to turn off background television or radio noise when visiting or talking on the phone. If public places such as stores are confusing, try to shop when stores are less crowded. When feeling overwhelmed in a particular setting, a person may want to leave for a little while and find a quiet place to relax.
People with problems in executive functions can try using “process thinking.” This is a technique in which they speak out loud and create a step-by-step guide to the task they want to accomplish. Speaking out loud also forces a person to slow down his or her thinking, which reduces chances for impulsive errors.
Caregivers might also need to adjust their thinking. For example, asking a confused person to “clean up the kitchen” can cause frustration and anxiety for both parties. It is much better to make a written list, breaking the job down into several simple, clear tasks: 1) wash the pans in the sink, 2) put the clean dishes in cupboard, 3) wipe the countertop, etc.
Aggressive or combative behavior
Some behaviors present special challenges. In rare cases, a person can suffer from agitation or paranoia. Behavior can become aggressive or combative. These behaviors can be caused or intensified by various medications. Doctors manage these symptoms by modifying drug dosages, or by prescribing antipsychotic drugs or tranquilizers.
Aggressive behavior is particularly difficult when safety becomes an issue. The best strategy is to pay attention to warning signs of growing anger or threats of violence. Tell your doctor, and try to resolve the problem before it escalates.
When dealing with an agitated person: Try to create a calm environment. Reduce noise, bright lights, excess movement, and the number of people in the vicinity. Alternately, remove your loved one from stressful situations.
Speak calmly and maintain eye contact. Assure the person of his or her safety. Orient the person by identifying yourself and stating your intentions.
Find out if something specific is bothering the person and resolve the problem. For example, the person may be hungry, thirsty, tired, afraid of something, or need to go to the bathroom. Try to calm the person by encouraging him or her to talk and by listening to his or her complaints. Don’t disagree or argue with the person. Let the person talk until he or she calms down.
If the person becomes combative, remain calm. Take a few steps back and give the person plenty of room. Continue to agree and assure the person that he or she is safe.
Assess the level of danger. If the person is about to hurt himself or someone else and it is safe to intervene, step in and say “stop” or “no” in a calm but firm voice. Gently restrain the person if possible.
If you believe your own safety or the safety of others is at stake, do not hesitate to get help. If you call for outside help, make it very clear that your loved one is very ill and confused.
Inform your doctor immediately of episodes of uncontrolled rage, violence, or any dangerous, impulsive behaviors.
Using teamwork to cope
In all cases, it is important to notify your medical team about behavior changes. Chronic illness of a family member can cause emotional distress to the entire family. Dr. Kayl recommends an active role of patients and caregivers in finding ways to cope. “The bottom line for all interventions is this: there is no magic bullet. Each patient will bring different strengths and weaknesses to the table. It’s up to the doctor-patient-family team to develop realistic and attainable goals for coping with cognitive and behavioral changes. What works for one person may not work for another. These are the differences that make us human.”
This article was reprinted with permission from Search, Issue #57 (Summer 2003). For more information, contact the National Brain Tumor Foundation at 800.934.2873 or visit www.braintumor.org.