🧠 Cognitive Changes

Memory, thinking, and personality changes are common in GBM. Understanding what's happening and learning strategies can help both patients and families cope.

💜 To patients: These changes are not your fault. They're caused by the tumor and treatment, not by anything you did or who you are. To families: The person you love is still there, even when things seem different.

🔍 Why Cognitive Changes Happen

Cognitive changes in GBM patients can come from multiple sources:

  • The tumor itself: Pressing on brain tissue, disrupting normal function
  • Brain swelling (edema): Causes pressure and dysfunction in surrounding areas
  • Surgery: Can affect nearby brain regions during tumor removal
  • Radiation: Can cause inflammation and longer-term changes
  • Chemotherapy: "Chemo brain" affects concentration and memory
  • Medications: Especially steroids and anti-seizure drugs
  • Fatigue: Exhaustion significantly impacts thinking
  • Depression and anxiety: Common and affect cognition
💡 Important: Some cognitive changes are temporary and may improve as swelling decreases or treatment effects subside. Others may be permanent. Work with your care team to identify treatable causes.

📋 Common Cognitive Changes

🔤 Word-Finding Difficulty

Trouble recalling words, names, or finishing sentences. You know what you want to say but can't find the words.

📝 Short-Term Memory

Forgetting recent conversations, appointments, or what you just read. Long-term memories usually stay intact.

🎯 Concentration

Difficulty focusing, easily distracted, trouble following conversations or complex tasks.

🔄 Processing Speed

Thinking feels slower. Need more time to understand information or respond to questions.

📊 Executive Function

Difficulty planning, organizing, problem-solving, or making decisions. Multi-step tasks become hard.

🧭 Spatial Awareness

Getting lost in familiar places, difficulty judging distances, trouble with navigation.

💫 Personality and Emotional Changes

These can be the most difficult changes for families to navigate:

😠 Irritability

Short temper, impatience, frustration that seems disproportionate. Often worse with fatigue.

😢 Emotional Lability

Rapid mood swings, crying or laughing at unexpected times, emotions feel uncontrollable.

😶 Apathy

Loss of interest, motivation, or initiative. May seem like depression but feels different inside.

🙈 Reduced Awareness

Not noticing their own deficits (anosognosia). May insist nothing is wrong when family sees changes.

🗣️ Social Changes

Saying inappropriate things, difficulty reading social cues, less filter in conversation.

😰 Anxiety

Increased worry, restlessness, difficulty with uncertainty. May manifest as repetitive questions.

⚠️ Frontal Lobe Tumors: Tumors in the frontal lobe often cause the most significant personality changes, as this area governs impulse control, planning, and social behavior. These changes are NOT the person's choice - they're symptoms of the disease.

🛠️ Coping Strategies for Patients

For Memory

✓ Tools That Help

  • Write everything down - Use a single notebook or app for all notes
  • Set phone reminders - For medications, appointments, tasks
  • Use a large calendar - Visible in a central location
  • Establish routines - Same place for keys, wallet, phone
  • Take photos - Of where you parked, important information
  • Repeat information - Say it back to confirm you understood

For Concentration

✓ Environment & Timing

  • Reduce distractions - Turn off TV, find quiet spaces
  • Work during best hours - Notice when you're sharpest (often morning)
  • Take breaks - Short rests before fatigue sets in
  • One thing at a time - Avoid multitasking
  • Break tasks into steps - Smaller chunks are manageable

For Word-Finding

✓ Communication Strategies

  • Give yourself time - Pause, don't rush
  • Describe instead - "The thing you use to open cans"
  • Use gestures - Point, demonstrate
  • Ask for patience - Let people know you may need a moment
  • Keep talking - The word often comes if you keep going
📱
Apps

Calendar, reminders, notes, pill trackers

📓
Brain Book

One notebook for everything important

🏷️
Labels

On drawers, cabinets, and containers

⏰
Alarms

Multiple daily reminders

💜 For Caregivers: Navigating Personality Changes

Watching personality changes in someone you love is one of the hardest parts of this journey. Some thoughts:

  • It's the disease, not the person. The irritability, the inappropriate comments, the apathy - these are symptoms. Your loved one is not choosing this.
  • Grief is normal. You may mourn the person they were even while caring for who they are now. Both feelings are valid.
  • Don't argue about reality. If they don't recognize their deficits, gentle redirection works better than correction.
  • Pick your battles. Not everything needs to be addressed. Focus on safety; let small things go.
  • Take breaks. You cannot pour from an empty cup. Respite is necessary, not selfish.
  • Find your people. Support groups of others in similar situations understand in ways others can't.
  • Seek professional help. Therapy for caregivers can be transformative.
💡 Communication Tips:
  • Speak slowly and clearly
  • Use short, simple sentences
  • Give one instruction at a time
  • Allow extra time for responses
  • Reduce background noise during conversations
  • Make eye contact
  • Be patient - frustration makes cognition worse

🏥 Professional Help

Cognitive Rehabilitation

A neuropsychologist or occupational therapist can:

  • Formally assess cognitive function
  • Develop personalized compensatory strategies
  • Provide exercises to strengthen cognitive abilities
  • Help adapt daily activities

Speech-Language Therapy

Can help with:

  • Word-finding difficulties
  • Reading and writing problems
  • Communication strategies

Mental Health Support

  • Psychiatrist: Can assess if depression, anxiety, or other conditions are contributing and prescribe appropriate medication
  • Psychologist/Therapist: Can help with adjustment, coping strategies, and emotional support
💡 Ask Your Team: Request referrals to neuropsychology, occupational therapy, or speech therapy. These services can significantly improve quality of life but aren't always offered automatically.

📈 What May Help Cognition

  • Sleep: Quality sleep is essential for cognitive function
  • Physical exercise: Even gentle movement helps brain health
  • Mental stimulation: Puzzles, reading, games (at appropriate difficulty)
  • Social interaction: Staying connected with others
  • Nutrition: Adequate hydration and balanced diet
  • Reducing steroid dose: When medically appropriate (steroids affect cognition)
  • Treating depression: Can significantly improve thinking
  • Medication review: Some drugs affect cognition more than others
⚠️ New or Sudden Changes: If cognitive function suddenly worsens, contact your care team. This could indicate tumor changes, increased swelling, infection, or other treatable causes.

❤️ Living With Cognitive Changes

Some reflections from the GBM community:

  • "I had to let go of who I was and accept who I am now." This is a process, not an event. Take your time.
  • "My family and I found humor helped." Laughing at the absurdity of forgetting the same thing three times can be better than crying.
  • "I stopped pretending I was fine." Being honest about limitations allows others to help.
  • "The most important things don't require perfect cognition." Love, connection, presence - these remain.

You are more than your cognitive function. Your worth is not measured by what you remember or how quickly you think. You matter, exactly as you are, today.

⚠️ Medical Disclaimer

This information is for educational purposes only. Cognitive changes in GBM are complex and should be evaluated by your medical team. If you notice sudden or significant changes in cognition, contact your care team promptly as this may indicate a change requiring medical attention.