Cognitive Changes
Cognitive changes are problems with thinking, memory and behavior. Some survivors may experience cognitive changes due to their cancers or cancer treatments. Knowing what is causing these problems can help you get the appropriate treatment.
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Cognitive Changes: Detailed Information
This information is meant to be a general introduction to this tic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources
Some cancers and treatments can result in cognitive changes. These may include changes in thinking, learning, processing or remembering information. Changes in these abilities may be upsetting because they can affect many aspects of life such as the ability to work or even to do everyday tasks that were routine before.
Cancer and treatment may have different effects on different individuals. Having chemotherapy, radiation or surgical treatment does not mean that you will have cognitive changes. Yet, it is important to know whether you have an increased risk of cognitive changes.
Cognitive changes can happen suddenly (acute onset) or they can come up slowly over time (gradual onset). These types of changes may occur very differently in adults and children. This document will focus primarily on cognitive changes in adults with cancer. Talk with your health care team if you have questions related to children who experience cognitive changes. Keep in mind that there are also other reasons for cognitive changes that are not related to cancer.
Who might be at risk for cognitive changes?
Survivors who have experienced the following might be more at risk for cognitive changes:
- Tumor located in the central nervous system (CNS) which includes the brain and spinal cord
- Treatments administered directly to the CNS
- Treatments administered when extremely ill
- Chemotherapy and radiation given to the brain at the same time
- Chemotherapy given into the spinal fluid after radiation
Cancer survivors who have not had any of the above procedures may also experience some cognitive changes. These changes may occur in survivors of all ages who have received different types of chemotherapy and radiation.
The frequency and severity of cognitive changes associated with chemotherapy can vary with the dose and type of medicine used. Changes are sometimes related to higher dose treatments of chemotherapy and the use of immunotherapy treatment to boost the immune system.
Those who had surgery to remove a brain tumor may also experience cognitive changes. The frequency and severity of the changes associated with radiation and surgery to remove a brain tumor depends on the amount of damage caused to surrounding healthy tissue.
Learn what cognitive changes to watch for so you can discuss any signs or symptoms with your health care team. Some changes after cancer are very minor and are reversible, meaning the changes will go away. However, some cognitive changes may be more noticeable and may not be reversible.
What are some of the symptoms of cognitive changes?
- Acute onset cognitive changes (delirium)
Acute onset cognitive changes are those that occur suddenly and come and go with no real pattern. This can happen during treatment with chemotherapy agents. Delirium is the term used to describe these cognitive changes. Certain medications and chemotherapy treatments can cause delirium, and it may be reversible.
Symptoms of delirium may include:
- Difficulty concentrating
- Reduced level of consciousness or the person seems "out of it"
- Person does not understand what is going on around him or her
- Unusual sleep patterns, such as awake at night and asleep during the day
- Agitation
- Confusion
- Memory loss
- Loud, aggressive behavior
- Hallucinations or seeing things that are not really there
- Disorientation or the person doesn't know where s/he is
- Quiet, inactive behavior, including sedation or confusion
- Gradual onset cognitive changes (dementia)
Gradual onset cognitive changes are considered to be chronic. This means that changes come about slowly over time and are long-lasting. Dementia is the term used to describe these cognitive changes. Symptoms of dementia might not appear until you finish active treatment for cancer. Dementia symptoms can be very mild and only slightly noticeable--or they can be very noticeable.
Symptoms of dementia may include:
- Poor short-term memory
- Poor long-term memory
- Difficulty with abstract thinking (such as adding numbers together)
- Poor judgment (makes unsafe decisions)
- Changes in personality (may become moody or upset without a noticeable cause)
- Difficulty with problem solving and following directions
- Disorientation (person doesn't know where s/he is)
- Chemo-brain
Sometimes survivors experience slight changes in their ability to remember or concentrate well after they have received chemotherapy. This very mild form of dementia is sometimes called "chemo-brain." Even these mild cognitive changes can disrupt daily living and the ability work.
Symptoms of chemo brain may include:
- Difficulty concentrating
- Difficulty remembering things that occurred recently
- Difficulty completing tasks
- Confusion
- Inability to think clearly
What causes cognitive changes in cancer survivors?
A tumor or cancer cells in the brain destroy healthy cells and can cause cognitive changes. Chemotherapy, radiation and surgery are treatments that are used to remove or destroy cancer cells. However, they can also damage some of the surrounding healthy cells. Depending on how much damage occurs, there could be noticeable problems with thinking, memory and behavior.
Chemotherapy can cause fatigue and anemia. These may also lead to cognitive problems, particularly with the ability to pay attention. In addition, a survivor can experience other conditions that cause cognitive changes that may or may not be related to cancer or treatment. Some of these conditions are reversible--some are not.
Other conditions that can cause cognitive changes may include:
- Medication problems
- Stress
- Anxiety
- Depression
- Electrolyte derangements
- Hypoxemia (low oxygen levels)
- Other diseases of the brain such as Alzheimer's disease or Parkinson's disease
- Thyroid problems
- Severe nutrition problems
Discuss all of the possible causes of cognitive problems with your health care team. This will help you receive the correct diagnosis and treatment.
When do cognitive changes occur?
Cognitive changes can occur at any point during your experience with cancer. Sometimes they are the first sign of a brain tumor. These changes may also happen after completing cancer treatment or after taking certain medications.
- Chemo brain can occur during or after chemotherapy treatment.
- Delirium may occur suddenly during treatment. Delirium usually happens after an identified cause, such as chemotherapy, and it is often reversible.
- Dementia comes on gradually over time and usually after treatment is completed. It may be harder to identify than delirium, and it may not have one identifiable cause. Dementia can develop as early as three months after radiotherapy to the brain. It may also occur 48 months or longer after completion of radiation therapy. Dementia symptoms may also occur after surgery to remove a brain tumor.
What can be done to better manage cognitive changes?
Whether cognitive changes will improve or be permanent depends on their cause. Acute cognitive changes (delirium) that occur because of certain medicines often improve when you stop taking the medicine. Chronic changes (dementia) are often not reversible, but may be improved if the cause of the problems can be corrected.
If you notice changes in your thinking, memory or behavior, keep a record of the problems that you have. Ask your family or friends to also watch for changes. Talk to your health care team about these symptoms as soon as possible. Treating the underlying condition often lessens or eliminates the cognitive problems.
The following suggestions can help you manage cognitive changes:
- Take prescribed medication as directed.
Keep a journal of medications you are taking noting any side effects of the medications. Always talk to your health care team before you stop taking any medication. Check with your health care team before using any over the counter or prescription medications, or natural products to treat your symptoms.
Cognitive changes and problems with memory may make it hard to remember to take prescribed medication. If this is true, try different methods to help, such as:
- Writing down the time and date when you take the medication
- Taking the medication at the same time every day
- Using a medication reminder or pill dispenser
- Asking someone to help you keep track, if necessary
- Avoid dangerous activities if you are alone.
If you are having severe problems with concentration and memory, you may find yourself distracted. This could be dangerous during certain activities. Examples of activities you may want to avoid when alone include:
- Cooking
- Using tools that could cause injury
- Driving
- Traveling to unfamiliar places
- Ask your family to watch for safety issues:
If you have trouble with memory or concentration, you may want to sit down with your family and share your concerns. It may put your mind at rest to discuss ways they can help you go about your daily activities.
Examples of ways your family can help include:
- Creating a checklist to keep by the door for you to review to make certain that certain things have been done such as turning off kitchen appliances
- Driving you to appointments
- Helping you with specific challenging tasks
- Setting up a system to take medications properly
- Get plenty of rest and sleep:
Rest may not get rid of the problem, but enough rest may help make it better. If you have problems sleeping at night, consider trying the following:
- Limiting naps during the day
- Developing an exercise plan with your health care team
- Using a bedtime ritual, such as meditating
- Using aromatherapy
- Reading or other relaxing activities to prepare for sleep
This document was produced in collaboration with:
Terri S. Armstrong, MS, APRN, BC
Advanced Practice Nurse, Department of Neuro-Oncology
M.D. Anderson Cancer Center
Clinical Assistant Professor and Doctoral Student
University of Texas-Houston School of Nursing
Works Cited
Cohen, M.Z., & Armstrong, T. "Cognitive dysfunction." In C. Yarbro, M. Frogge, M. Goodman (Ed.), Cancer Symptom Management 3rd Edition: 635-650. Boston: Jones and Bartlett, 2004.
Armstrong, T.S., & Gilbert, M.R. "Central nervous system toxicity." Current Opinions in Oncology.
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Cognitive Changes: Suggestions
The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.
- Use a health journal to communicate symptoms and side effects of medicine with your health care team:
- Record any cognitive changes that you notice. Keeping a health journal will help you to remember examples when you had difficulty concentrating or remembering simple things. These examples can be valuable for communicating with your health care team.
- Write down everything you want to ask your health care team between appointments.
- Keep track of your medications and bring this information to the appointment, along with all of your medication bottles. This helps the health care team be informed about all of the medications you are taking, including vitamins and over-the-counter medications.
- Take notes during your health care appointments, and write down your next appointment date and time.
- Things you can do to help you keep track of important information:
- Keep all of your important documents together in a notebook that allows you to bring it with you to your appointments.
- Provide copies of relevant documents (such as test results) to the health care team. You can also fax or mail these to the doctor before the appointment. Allowing the health care team to read your documents may be an easier way for some people to communicate.
- Store pamphlets, medication side effect inserts and important phone numbers in your binder so that everything is in one place.
- Contact your health care team by phone to let them know of your concerns. This will alert your team about the changes you are experiencing and help make sure that you talk about them at your next appointment.
- Take the medication your health care team prescribes as directed to help cognitive changes:
Keep a journal of medications you are taking noting any side effects of the medications. Always talk to your health care team before you stop taking any medication. Check with your health care team before using any over the counter or prescription medications, or natural products to treat your symptoms.
- Avoid dangerous activities if you are alone:
If you are having severe problems with concentration and memory, you may find yourself distracted. This could be dangerous during certain activities. Examples of activities you may want to avoid when alone include:
- Cooking
- Using tools that could cause injury
- Driving
- Traveling to unfamiliar places
- Ask your family to watch for safety issues:
If you have trouble with memory or concentration, you may want to sit down with your family and share your concerns. It may put your mind at rest to discuss ways they can help you go about your daily activities.
- Talk with your family and an attorney about legal documents you may need:
- If you are beginning to experience cognitive problems, it is important to make sure your medical and financial wishes are respected. Talk to your family about your wishes. Also, talk to an attorney about the legal documents that you will need to do this.
- Organize important information for your family, including medical wishes, finances and estate planning.
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Cognitive Changes: Detailed Information
Cognitive changes are problems with thinking, including memory, concentration and behavior. These changes can influence many parts of your life, such as your ability to work or even to complete everyday tasks. Some cancers, cancer treatments and medications can cause cognitive changes for cancer survivors. However, there are many other causes of cognitive changes that are not related to cancer.
Experiencing problems with thinking and concentration can be very scary. It can be very upsetting to realize that you have successfully treated your cancer but are now experiencing cognitive problems as a result of the cancer, its treatment or some other cause. Just because you had chemotherapy, radiation or surgery does not mean that you will definitely have cognitive changes. But it is important to know what the symptoms are so that you know what to look for.
If you do notice problems with thinking, memory or behavior, talk to your health care team right away. To get the correct treatment, it is important to find out what is causing the cognitive problems.
Sometimes the cognitive changes that are related to cancer are very minor and are reversible, meaning the changes will go away. Some cognitive changes can be more noticeable, however, and may not be reversible. Cognitive changes can happen suddenly (acute onset), or they can come up slowly over time (gradual onset).
Who is at risk for cognitive changes?
Survivors who experienced the following might be more at risk for cognitive changes:
- Central nervous system (CNS) involvement with tumor
- Treatments administered directly to the CNS
- Treatments administered when extremely ill
- Chemotherapy and radiation given to the brain at the same time
- Chemotherapy given into the spinal fluid after radiation
Cancer survivors who did not experience any of the above procedures may still experience some cognitive changes. Cognitive changes can occur in survivors of all ages who received all types of chemotherapy and radiation. Those who had surgery to remove a brain tumor can also experience cognitive changes. The frequency and severity of cognitive changes associated with chemotherapy varies with the dose and type of medicine used. Cognitive changes are sometimes related to higher dose treatment of chemotherapy and the use of immunotherapy, treatment to boost the immune system. The frequency and severity of cognitive changes associated with radiation and surgery to remove a brain tumor depends on the amount of damage caused to surrounding healthy tissue.
What are some of the symptoms of cognitive changes?
Acute onset cognitive changes (delirium)
Acute onset cognitive changes are those that occur suddenly and come and go with no real pattern, often during treatment with chemotherapy agents. Delirium is the term used to describe these cognitive changes. Certain medications and chemotherapy treatments can cause delirium, and it may be reversible.
Symptoms of delirium may include:
- Difficulty concentrating
- Reduced level of consciousness (person seems “out of it”)
- Person does not understand what is going on around him or her
- Unusual sleep patterns (awake at night, asleep during the day)
- Agitation
- Confusion
- Memory loss
- Loud, aggressive behavior
- Hallucinations (seeing things that aren’t really there)
- Disorientation (person doesn’t know where s/he is)
- Quiet, inactive behavior (including sedation and confusion)
Gradual onset cognitive changes (dementia)
Gradual onset cognitive changes are considered to be chronic, meaning they come about slowly over time and are long-lasting. Dementia is the term used to describe these cognitive changes. Symptoms of dementia might not appear until you finish active treatment for cancer. Dementia symptoms can be very mild and only slightly noticeable, or they can be very noticeable.
Symptoms of dementia may include:
- Poor short-term memory
- Poor long-term memory
- Difficulty with abstract thinking (adding numbers together)
- Poor judgment (makes unsafe decisions)
- Changes in personality (may become moody or upset without a noticeable cause)
- Difficulty with problem solving and following directions
- Disorientation (person doesn’t know where s/he is)
Sometimes survivors experience slight changes in their ability to remember or concentrate well after they have received chemotherapy. This very mild form of dementia is sometimes called “chemo-brain.”
Symptoms of “chemo brain” may include:
- Difficulty concentrating
- Difficulty remembering things that occurred recently
- Difficulty completing tasks
- Confusion
- Inability to think clearly
What causes cognitive changes in cancer survivors?
Cancer cells in the brain (a tumor) destroy healthy cells and can cause cognitive changes. Chemotherapy, radiation and surgery are used to remove or destroy cancer cells, but these treatments can also damage the surrounding healthy cells. Depending on how much damage occurs, there could be noticeable problems with thinking, memory and behavior. Additionally, chemotherapy can cause factors like fatigue and anemia, which may also lead to cognitive problems, particularly with being able to pay attention.
Also, a survivor can experience other conditions that may or may not be related to cancer or its treatment that can cause cognitive changes. Some of these conditions are reversible; some are not.
Some other conditions that can cause cognitive changes:
- Medication problems
- Stress
- Anxiety
- Depression
- Electrolyte derangements
- Hypoxemia (low oxygen levels)
- Other diseases of the brain (Alzheimer’s disease and Parkinson’s disease for example)
- Thyroid problems
- Severe nutrition problems
It is important to discuss with your health care team all of the possible causes of cognitive problems so that you receive the correct diagnosis and treatment.
When do cognitive changes occur?
Cognitive changes can occur at any point during your experience with cancer. Sometimes cognitive changes are the first sign of a brain tumor. Cognitive changes may also occur after completing cancer treatment or after taking certain medications.
Delirium may occur suddenly during treatment. Delirium usually occurs after an identified cause (chemotherapy, for example) and is often reversible.
Dementia occurs gradually over time and usually occurs after treatment is completed. Dementia may be harder to identify than delirium, and may not have one identifiable cause. It can develop as early as three months after radiotherapy, but can also occur 48 months or longer after completion of radiation therapy to the brain. “Chemo brain” can occur during chemotherapy treatment or after the treatment has been completed. Dementia symptoms may also occur after surgery to remove a brain tumor.
Can cognitive changes be cured?
Whether cognitive changes will improve or be permanent depends on their cause. Acute cognitive changes (delirium) that occur because of certain medicines often improve when you stop taking the medicine. Chronic changes (dementia) are often not reversible, but may be improved if the cause of the problems can be corrected.
If you notice changes in your thinking, memory or behavior, keep a record of the problems that you have and ask your family or friends to watch for additional problems. Make an appointment to talk to your health care team about these symptoms as soon as possible. Treating the underlying condition often reduces or removes cognitive problems.
What are some suggestions for survivors who may be experiencing cognitive changes?
- Use the Cancer Survivor’s Health Journal to communicate symptoms and side effects of medicine with your health care team.
- Take the medication your health care team prescribes to help cognitive changes as directed.
- Avoid dangerous activities if you are alone.
- Ask your family to watch for safety issues.
- Talk to your family and an attorney about legal documents you may need to make sure your medical and financial wishes are respected.
- Get plenty of sleep.
This document was produced in collaboration with:
Terri S. Armstrong, MS, APRN, BC
Advanced Practice Nurse, Department of Neuro-Oncology
M.D. Anderson Cancer Center
Clinical Assistant Professor and Doctoral Student
University of Texas-Houston School of Nursing
Works Cited
Cohen, M.Z., & Armstrong, T. “Cognitive dysfunction.” In C. Yarbro, M. Frogge, M. Goodman (Ed.), Cancer Symptom Management 3rd Edition: 635-650. Boston: Jones and Bartlett, 2004.
Armstrong, T.S., & Gilbert, M.R. “Central nervous system toxicity.” Current Opinions in Oncology.
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Cognitive Changes: Suggestions
Use the Cancer Survivor’s Health Journal to communicate symptoms and side effects of medicine with your health care team:
- The Cancer Survivor’s Health Journal can be found in the Survivorship Tools area.
- Use the Health Diary to record any cognitive changes that you notice. Keeping a Health Diary will help you to remember examples when you had difficulty concentrating or remembering simple things. These examples can be valuable for communicating with your health care team.
- Use the Health Care Team Appointment document to write down everything you want to ask your health care team. You can write notes and questions on the sheet between appointments.
- Use the List of Medications to keep track of your medications. Bring this document to the appointment along with all of your medication bottles. This lets the team know all the medications you are taking, including vitamins and over-the-counter medications.
- Use the Health Care Team Appointment document to take notes during the appointment and to write down your next appointment date.
- Keep all of these documents together in a binder and bring it with you to your appointments.
- Bring extra copies of all of these documents with you to give to the health care team. You can also fax or mail these documents in before the appointment. Having the health care team read your documents may be an easier way for you to communicate.
- You can store pamphlets, medication side effect inserts and important phone numbers in your binder so that everything is in one place.
- You can also contact your health care team by phone to let them know of your concerns. This will alert your team about the changes you are experiencing and help make sure that you talk about them at your next appointment.
Take the medication your health care team prescribes to help cognitive changes as directed:
The very nature of cognitive changes and memory challenges may make it difficult to remember to take prescribed medication. There are strategies that can help you to remember.
Some strategies for taking medication appropriately:
- Take the medication at the same time every day
- Use a medication reminder or pill dispenser
- Talk to your health care team before you stop taking any medication
- Keep a journal of medications you are taking noting any side effects of the medications
Check with your health care team before using any over the counter or prescription medications, or natural products to treat your symptoms.
Avoid dangerous activities if you are alone:
If you are having severe problems with concentration and memory, you may find yourself distracted and potentially placing yourself in harm’s way during certain activities.
Examples of activities you may want to avoid when alone:
- Cooking
- Using tools with which you can injure yourself
- Traveling to unfamiliar places
Ask your family to watch for safety issues:
If you have trouble with memory or concentration, you may want to sit down with your family and share your concerns. Discussing ways they can assist you in going about your daily activities may put your mind at ease in your daily activities.
Examples of ways your family can help:
- Create a checklist to keep by the door to review if you have turned off kitchen appliances
- Have someone drive you to appointments if traffic is too distracting
Talk to your family and an attorney about legal documents you may need:
- When you are experiencing cognitive problems, it is important to make sure your medical and financial wishes are respected. Talk to your family about your wishes and talk to an attorney about the legal documents that you will need.
- You can use the Practical Information Summary to organize information on your family, medical wishes, finances and estate planning. The Practical Information Summary can be found in the Survivorship Tools area.
Get plenty of sleep:
Rest may not get rid of the problem but may help make it better.
- Limit napping during the day
- Develop an exercise plan with your health care team
- Have a bedtime ritual, such as meditating
- Use aromatherapy, reading or other relaxing activities to prepare for sleep
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Cognitive Changes: Additional Resources
The resources listed below provide more detailed information and support services to help you with cognitive changes. Please read the Detailed Information and Suggestions document for more information and questions to ask.
Click a resource for more information:
CancerSymptoms.org
www.cancersymptoms.org
| Email: |
Send email through the Web site. |
This Web site provides information on the causes and symptoms of cognitive changes and how to manage them. Other common aftereffects such as pain, fatigue and depression are also covered. You can ask a nurse about your symptoms by sending an email from the home page.
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Candlelighters Childhood Cancer Foundation
www.candlelighters.org
The Candlelighters Childhood Cancer Foundation offers information and publications on treatment and late effects for childhood cancer survivors. They describe the cognitive changes that children can experience and ways to manage them. Although this information is written about children, adults may find some of it useful in understanding cognitive changes and aftereffects. The Candlelighters Foundation also provides free books about cancer to children and their families who are affected by cancer.
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National Coalition for Cancer Survivorship (NCCS)
www.canceradvocacy.org
| Email: |
info@canceradvocacy.org |
| Phone: |
1-877-NCCS-YES (1-877-622-7937) |
| |
An information specialist is available from 8:30 a.m. to 5:30 p.m. (EST). |
The NCCS Web site provides comprehensive information on a wide range of cancer topics, including managing the side effects of cancer treatment, controlling pain, understanding clinical trials, maintaining good nutrition and exercise habits, getting the most out of your health insurance coverage and addressing employment issues. In addition, you can browse the Resource Guide for resources grouped by cancer type, by topic and by service. NCCS also offers the Cancer Survival Toolbox®, a free audio program created to help people develop important skills to better meet and understand the challenges of their illness. The Toolbox offers information on communicating, decision making, problem solving, finding information, negotiating, and standing up for your rights for those living with, through, and beyond cancer. NCCS also offers a variety of publications that can be ordered free of charge. Information on the NCCS Web site is available in Spanish, and the Cancer Survival Toolbox is available in both Spanish and Chinese.
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LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare
| Email: |
Send email through the Web site. |
| Phone: |
1-866-235-7205 |
| |
Case managers take calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (EST). Voicemail is available after hours. |
LIVESTRONG SurvivorCare offers assistance to all cancer survivors, including the person diagnosed, caregivers, family and friends. The program provides education, information about treatment options and new treatments in development, counseling services and assistance with financial, employment or insurance issues. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations, including CancerCare, Patient Advocate Foundation and EmergingMed.
The LIVESTRONG Survivorship Notebook is a tool that can help you organize and guide your cancer experience. The portable, three-ring binder contains a variety of information covering a full range of physical, emotional and practical survivorship topics. You may order a free LIVESTRONG Survivorship Notebook at www.livestrong.org/notebook. Shipping and handling charges will apply.
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