How to Manage Cognitive Shifts and Personality Changes in Your Loved One With Glioblastoma

As glioblastoma tumors grow, they can affect parts of the brain responsible for tasks such as decision-making, impulse control, emotion regulation, and memory, says Felicity Harper, PhD, a clinical psychologist with the supportive oncology multidisciplinary team at Barbara Ann Karmanos Cancer Institute in Detroit. Brain swelling, seizures, and steroid treatment associated with your loved one’s glioblastoma can lead to fluid buildup, known as edema, which can also lead to mood swings, personality changes, and changes in alertness, she says.

“As a result, people with glioblastoma can experience sudden and unexpected changes in behavior, emotions, and personality,” says Dr. Harper.

Types of Behavioral Shifts

• Increased irritability and agitation
• A lower ability to manage emotions
• Mood swings
• Restlessness
• Trouble with memory
• Apathy or reduced social engagement

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• Confusion
• Aggression

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• Impulsive behavior

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These behaviors can seemingly come out of nowhere and without context, Harper says. “People can also become easily confused and forgetful, forgetting what they were just told or being confused as to where they are or what is happening around them,” she says.

• Tumor Location Brain tumors can grow in different areas of the brain, all of which manage different functions. Frontal lobe tumors in particular can cause behavior and thinking changes.
• Treatment Effects Side effects from steroids, seizure medications, and radiation can change chemicals in your brain that manage behavior and thinking.
• Health History If your loved one already has depression, anxiety, or another mental health condition, glioblastoma or its treatment may make those symptoms worse.
• Brain Changes Increased pressure on the brain, inflammation, and unbalanced neurotransmitter (brain messenger) levels can result from glioblastoma and treatment.

“As the disease progresses, these behavioral changes often become more pronounced,” Dr. Youssef says.

Handling High-Stress Moments

If your loved one is acting out of character or is apathetic, confused, or aggressive, it can feel overwhelming for you. Numerous strategies can help you handle these moments.

Remember: It’s Not Personal

It may be hard to remember in the moment, but your loved one’s behavior may not be directed at you, Harper says.

“The tumor is causing these changes, and the person is not acting willfully,” she says, adding that the changes are not “a reflection of their true thoughts and feelings.”

If a behavior starts to ramp up, try to remind yourself of this fact.

Validate, Then Redirect

From there, gently redirect the conversation or shift to a different activity, Youssef says.

“It is also completely appropriate for caregivers to step away and take a brief break if needed,” he says. “Creating space can benefit both the patient and the caregiver.”

Identify Triggers

If you notice a frequent behavior, you can try to identify triggers that prompt it or keep it going, Harper says. She suggests asking these questions when your loved one is upset or acts out of character:

• Are they in pain or physically uncomfortable?
• Are they afraid?
• Are they lacking stimulation or activities to motivate them or keep them engaged?

For example, if you notice that hunger makes your loved one agitated, you can offer a snack when emotions start to run high.

Gently Reengage

Apathy is often one of the more difficult changes for families to process, Youssef says. But you can take steps to reengage someone who has this symptom.

“Open-ended questions can feel overwhelming, so offering simple, concrete choices is often more effective,” Youssef says.

You can also suggest activities or tasks that are broken down into smaller, more manageable steps to draw someone out, he says.

Stay Flexible

Different techniques may work differently on different days, so it’s important to stay flexible to your loved one’s needs, Harper says.

“Understanding that some approaches may work better than others at certain times or in certain places, or that a combination of methods might be needed to help the person cope, supports us in being effective caregivers,” she says.

Prioritize Self-Care

• Taking a shower or washing your face
• Eating a healthy snack instead of skipping a meal
• Changing your clothes
• Going on a walk
• Dancing to a favorite song

Schedule regular time to bring in other caregivers to share the load, Harper says. If you don’t have access to relief care, you can find caregiver support through these organizations:

• United Way
• National Family Caregivers Association
• American Cancer Society
• National Cancer Institute

Safety Tips

“In my experience, these adjustments are not only more effective when implemented early but also better received when patients can still participate in the decision-making process,” Youssef says. “Small modifications can make a surprisingly large difference.”

• Declutter the hallways and spaces that your loved one often walks through to prevent tripping.
• Use memory aids such as alarms and calendars for medications and daily tasks.

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• Redecorate with soothing, neutral colors to help lower anxiety.
• Add handrails and nonslip mats in the bathroom.
• Make lighting adjustable to protect against sensitivity to bright lights.

“We strongly recommend securing potentially dangerous items — such as firearms, knives, and medications — so they are not easily accessible,” Youssef says.

Treatments for Cognitive Changes

Harper says that doctors may prescribe numerous types of medications to control the cognitive and behavioral symptoms of glioblastoma:

• Antidepressants
• Anxiety medications
• Antipsychotics

“Overall, relatively few medications provide substantial benefit in reversing cognitive changes in patients with glioblastoma,” Youssef says, “but several can help manage specific contributing factors and symptoms.”

For example, he says, dexamethasone can reduce brain swelling, and levetiracetam can prevent seizures.

• Memory training
• Concentration exercises
• Problem-solving tasks

Remember that your team of healthcare providers are there to help your loved one and you every step of the way.

The Takeaway

• When a loved one has the brain cancer glioblastoma, you may expect behavioral changes and other shifts in brain function that can feel distressing and overwhelming.
• During moments of high stress, validate what your loved one is saying, try to notice triggers for different behaviors, and remember that much of what you are seeing and hearing is a result of the tumor, its treatment, or stress itself.
• You can keep your loved one safe as glioblastoma progresses by stowing away dangerous items, keeping walking spaces clear, and using memory aids for medications and important events.
• Remember to build in time for yourself as a caregiver with self-care activities, and keep in mind that support may be available.