Caregiver Tips | Managing the Cognitive Symptoms

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Managing the Cognitive Symptoms of a Brain Tumor & Treatment Side Effects

Sometimes he would be very clear, and other days he would be much more forgetful. It seemed random and varied by day.

In addition to the physical changes that a patient experiences, brain tumors and treatment also may cause emotional, cognitive and psychological changes. Your loved one may have frequent mood swings, forget things, or have difficulty communicating. These symptoms may be mild or severe, and change over time.

Sometimes, these changes are so minor that only the patient recognizes them. Other times, the caregiver recognizes that something is different, even when the patient does not.

The memory problems are hard for me to handle. She doesn’t know that she can’t walk, so she gets upset every time she ‘discovers’ there’s a seat belt on her wheelchair

Often, these psychological and emotional changes are more difficult for patients and caregivers to manage than physical changes. These difficulties may affect the family’s daily life, and they do not always go away, which can cause additional distress for both the caregiver and patient.

Caregivers may feel the person they once knew is no longer there. Patients may experience anger, frustration and depression because they can no longer function as they used to.

Medication, mental and physical exercises as well as psychological counseling for both the patient and the caregiver can help diminish the effects of these changes. But why do these types of brain tumor symptoms occur, and how can caregivers best handle them?

Causes of neurobehavioral changes

A number of factors can lead to changes in behavior in patients with brain tumors. The location, size, and growth rate of the tumor can have a lot to do with how a patient behaves. Treatments such as radiation, surgery, and chemotherapy can also affect how the patient feels and acts. The psychological and emotional effects of having a brain tumor are important to consider as well.

The location of the tumor or damage from treatment and/or surgery can affect the type of cognitive changes you see. For example, patients with damage to the frontal lobe may be more likely to experience mood disturbances. A tumor in or damage to the temporal lobe can lead to an inability to understand multi-step commands, while damage to the hypothalamus may cause emotional changes.i One caregiver related how her husband lost facility in math and handwriting, both of which are controlled by the parietal lobe.

When we go out to eat he can’t calculate the tip. He has trouble writing, so I write for him. It’s a role reversal. I’m the one that does the things he used to be able to do.

Types of cognitive, psychological and behavioral changes

There are many types of cognitive and psychological symptoms that the patient with a brain tumor may experience.

  • Emotional and personality. The patient may develop psychiatric symptoms such as depression, anxiety, or obsessive-compulsive behaviors. He or she may also have mood swings, exhibit frequent irritability, display socially inappropriate behavior, or deny that he or she has any behavioral problems at all. For example, a typically easy-going person may suddenly have outbursts of rudeness or anger.
  • Learning and memory. Some patients may show difficulty processing, storing and retrieving information, or may have short-term memory loss. This could be exhibited by a patient asking what is for dinner, and then asking again several more times a few minutes later as if he or she is asking a new question. Typically, short-term memory loss occurs more frequently than long-term memory loss.
  • Attention and concentration. This is exhibited by confusion, frequent distraction, and difficulty planning. One caregiver recalled how his wife continuously would ask him where the clothes hamper was, although he had shown it to her several times.
  • Executive functioning. The patient may seem unreasonable or irrational, with an inability to implement good judgment or decision making.

Ways to help the patient

Identify and acknowledge your own emotions first

Because dealing with cognitive and behavioral changes is so difficult, you may experience many common caregiver emotions discussed in the section on “Caring for the Caregiver".

My husband is one of the kindest men on earth. It was so out of character for him to strike me.

Sometimes it’s like caring for a stranger.

As a first step to helping the patient with neurobehavioral changes you will need to acknowledge your own emotions.

  • Many caregivers experience anticipatory grief, the painful feeling of having lost something before it’s gone. A brain tumor can rob you of your loved one’s company long before you are prepared. You may grieve because your loved is no longer the same. You may grieve for the loss of the life you expected to have.
  • Caregivers may also experience guilt and shame. They may wish for the end to come, then feel horrible guilt for thinking such a thing. These feelings are not uncommon, and should not be a source of shame.

    The social worker knew my husband’s tumor had improved, and she asked me if I was glad. But I couldn’t fake being happy. The news about the tumor didn’t bring me any relief. The social worker understood, and told me that many caregivers feel like I do

  • Current grief is focused on the changes that are happening now. Struggling financially, losing your independence to care for another person and taking on the many responsibilities of a caregiver are some examples of issues that can cause painful emotions for caregivers.

If you are experiencing thoughts of hopelessness, or thoughts of hurting yourself, the patient, or others, contact the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or chat live with one of their counselors at www.suicidepreventionlifeline.org. You will be connected with a skilled, trained counselor at a crisis center in your area, anytime, 24/7. If this is not helpful to you or you continue to struggle with these thoughts, call 911.

The caring professionals at the ABTA CareLine (1-800-886-ABTA, M-F, 8:30 a.m. – 5:00 p.m. Central time or by email at ABTACares@abta.org, answered within 24 business hours) can help provide you with information and tools. In addition, read “When you need help now” in the section “Caring for the Caregiver” for more resources.

Next: Talk about the patient’s symptoms with the health care team

Changes in memory, cognition and personality are important to share with the patient’s medical team. There is no singular solution to neurological impairments. They can be temporary and they can also be long-term. As with all side effects, you can keep track of your observations in a side-effects log. Use the information from the log to discuss options with your doctor. He or she can either do a simple assessment or refer you to a neurologist or neuropsychologist for further evaluation.

A support group maybe a good outlet for you and the patient to express yourselves and hear from others about their experiences. For a list of brain tumor support groups, visit http://www.abta.org/brain-tumor-treatment/brain-tumor-support/support-groups.

Consider treatment options

Just as patients strengthen their bodies through physical therapy, cognitive functioning can be improved by rebuilding neuropathways in the brain with a variety of methods. These include:

  • Cognitive rehabilitation therapy. Similar therapies include cognitive retraining, memory retraining, cognitive rehabilitation, brain injury rehabilitation, problem solving therapy and brain therapy. Although all of these therapies may differ slightly, they are all geared towards regaining cognitive function and/or memory skills that may have been lost during the course of the disease or treatment. Read more about cognitive rehabilitation therapy.
  • Psychotherapy. Depression is a common side effect in brain tumor patientsii, even for those who have never shown signs of depression in the past. Therapy with a psychologist can help. Read more about how to detect and find treatment for depression in brain tumor patients.
  • Medication. Anti-depression medication and other types of medication can help lessen the effects of depression and, in some cases, attention and concentration issues.
  • Speech and language therapy. This type of therapy can help regain speech skills, including the patient’s ability to express him or herself as well as the ability to comprehend others. Read more about speech and language therapy for brain tumor patients.

Detecting depression

If you have immediate concerns that the patient may commit suicide, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or chat live with one of their counselors at www.suicidepreventionlifeline.org. You will be connected with a skilled, trained counselor at a crisis center in your area, anytime, 24/7. If this is not helpful to you or you need help right away, call 911.

It can be difficult to identify depression in brain tumor patients. Understandably, patients can have strong negative feelings about their condition and exhibit behaviors such as crying, feelings of sadness, and disinterest in everyday activities.

Since depression is such a common symptom of having a brain tumor, it is important to take note of the signs and symptoms. If you are unsure or concerned that the patient may be experiencing depression, mention the symptoms to the patient’s care team or ask for a referral to a specialized therapist, social worker or counselor.

Helping the patient at home

It was hard to see his heart break when he couldn’t express himself. It was hard for me to receive text messages that made no sense. Practice is critical. I just wanted him to be patient with himself. So he would practice, and say words over and over again until he got it right.

There are a variety of ways to help the patient cope with memory loss, mood swings and cognitive changes at home. For example:

  • Listen, validate and empathize with the patient (“I can tell you’re really frustrated. This is really difficult for you.”)
  • Minimize distractions so the patient can focus on one thing at a time.
  • Provide opportunities for the patient to maintain control over choices in daily living, activities and treatment as much as possible.
  • Develop and stick to routines.
  • Use reminders around the house, like Post-it notes.
  • Help the patient write down or record things he/she wants to remember.
  • Activities such as reading, writing, drawing, playing an instrument and doing crossword puzzles can help keep the brain active.

Cognitive and emotional changes are difficult to experience for both the patient and the caregiver. Remember that they are neither your fault, nor the patient’s. They are legitimate symptoms and side effects of the brain tumor and treatment, and can be mitigated. Talk to the patient’s care team about these side effects and symptoms, and learn more about managing memory loss and improving cognitive and emotional responses.

 

 

iGoodman S, Rabow M, Rolkman S. Orientation to caregiving: a handbook for family caregivers of patients with brain tumors. University of California, San Francisco. Published 2007. Updated 2013. http://www.abta.org/secure/orientation-to-caregiving.pdf.
iiLitofsky NS, Resnick AG. The relationships between depression and brain tumors (abstract). Journal of Neuro-Oncology. September 2009;94(2):153-61. http://link.springer.com/article/10.1007/s11060-009-9825-4.