Understanding Dementia Medication Side Effects: A Guide for Families

Published on April 13, 2024

Updated on May 12, 2024

Introduction

Dementia affects millions of families worldwide, and navigating its challenges can be overwhelming. As a caregiver or family member, you play a crucial role in supporting your loved one. One essential aspect of is understanding the medications prescribed to manage the condition.

Why Medication Matters

Imagine a puzzle with missing pieces. Dementia disrupts memory, thinking, and daily life, leaving gaps that affect not only the person with dementia but also those around them. Medications are like those missing puzzle pieces—they help slow down the progression of the disease, improve cognitive function, and enhance quality of life.

The Medications We’ll Explore

In this , we'll delve into several commonly prescribed dementia medications:

  1. Donepezil (Aricept®): Often used for Alzheimer's disease, it helps boost memory and cognition.
  2. Rivastigmine (Exelon®): This drug supports brain function and is helpful for Alzheimer's and Parkinson ‘s-related dementia.
  3. Galantamine (Razadyne®): Enhances memory and concentration, especially in mild to moderate Alzheimer's.
  4. Memantine (Namenda®): Targets symptoms like confusion and agitation.
  5. Lecanemab: An investigational drug showing promise in slowing cognitive decline.

Types of Dementia

Dementia isn't a single entity—it's an umbrella term for various conditions affecting memory, reasoning, and behavior. These include Alzheimer's disease, vascular dementia, Lewy body dementia, and more. Each type has unique features, and the medications we discuss can apply to different forms.

Five Most Common Types of Dementia

Dementia Disease NameShort DescriptionPercentage PrevalenceCommon SymptomsStagingSimilarities
Alzheimer's diseaseA type of dementia caused by abnormal buildups of proteins in the brain60-80% of all cases of dementiaMemory loss, difficulty with language, numbers, or reasoning, mood swings, personality changes, , , or paranoiaMild, moderate, or severe
Uses (stages 1-3 early/mild, 4-5 middle/moderate, 6 late, 7 terminal/severe)
Similar to other types of dementia in causing memory loss and cognitive decline, but different in the cause, the pattern, and the treatment of the disease
Vascular dementiaA type of dementia caused by reduced blood flow to the brain10-20% of all cases of dementiaMemory loss, difficulty with language, numbers, or reasoning, trouble with planning, organizing, or following instructions, mood changes, personality changes, slowed thinking or movementMulti-infarct dementia, subcortical vascular dementia, post-stroke dementia, or mixed dementiaSimilar to other types of dementia in causing memory loss and cognitive decline, but different in the cause, the pattern, and the treatment of the disease
Mixed dementiaA condition where more than one type of dementia occurs simultaneouslyUp to 45% of people with dementiaMemory loss, fluctuations in alertness, attention, or cognition, visual , parkinsonism, sleep problems, autonomic dysfunctionDepends on the combination and severity of the types of dementiaSimilar to other types of dementia in causing memory loss and cognitive decline, but different in the complexity and unpredictability of the symptoms and the progression of the disease
Dementia with Lewy bodiesA type of dementia that involves abnormal deposits of a protein called alpha-synuclein in the brain5-10% of all cases of dementiaMemory loss, fluctuations in alertness, attention, or cognition, visual hallucinations, parkinsonism, sleep problems, autonomic dysfunctionMild, moderate, or severeSimilar to other types of dementia in causing memory loss and cognitive decline, but different in the cause, the pattern, and the treatment of the disease
Frontotemporal dementiaA type of dementia that affects the frontal and temporal lobes of the brain2-5% of all cases of dementiaLoss of interest or motivation, lack of empathy or awareness, impulsive or inappropriate actions, poor judgment or planning, difficulty finding words or understanding speech, repeating words or phrases, changes in mood or personality, withdrawal from social activities, eating too much or too little, having trouble with movement or balanceBehavioral variant FTD, semantic variant primary progressive aphasia, nonfluent variant primary progressive aphasia, corticobasal syndrome, or progressive supranuclear palsySimilar to other types of dementia in causing memory loss and cognitive decline, but different in the cause, the pattern, and the treatment of the disease

Your Role as a Family Member

As you read this embrace empathy and patience. Understand that dementia is a journey, and each day brings new challenges. By learning about medication side effects and monitoring your loved one's well-being, you become an advocate for their health.

Common Dementia Medications

When a loved one is diagnosed with dementia, understanding their medications becomes essential. Let's explore the commonly prescribed drugs and how they work:

Donepezil (Aricept®):

  • What It Does: Donepezil is approved to treat all stages of dementia. It's like a gentle hand guiding memory pathways.
  • How It Works: Donepezil improves communication between nerve cells in the brain by slowing down the breakdown of a chemical messenger called acetylcholine. Think of it as a bridge connecting memory islands.

Rivastigmine (Exelon®):

  • What It Does: Rivastigmine helps manage mild to moderate dementia symptoms.
  • How It Works: Like a gardener tending to memory flowers, rivastigmine belongs to a group of medications called cholinesterase inhibitors. It boosts acetylcholine levels, allowing nerve cells to chat more effectively.

Galantamine (Razadyne®):

  • What It Does: Galantamine is another friend in the dementia journey, especially for mild to moderate Alzheimer's.
  • How It Works: Galantamine is like a light switch—when turned on, it enhances memory and concentration, brightening the room of cognition.

Memantine (Namenda®):

  • What It Does: Memantine steps in when dementia gets tougher. It's for moderate to severe dementia.
  • How It Works: Unlike the others, memantine dances to a different tune. It helps regulate a chemical called glutamate, preventing nerve cell damage. Imagine it as a protective shield for the brain.

Lecanemab:

  • What It Does: Lecanemab is still under investigation.
  • How It Works: Consider Lecanemab a curious explorer seeking ways to slow cognitive decline. It's like a mapmaker charting unexplored territories.

The medications prescribed for dementia are not meant to be taken for the entire course of the illness. However, they can provide some relief during a particular stage of the dementia journey. It's important to remember that these medications are not a cure for dementia. They can temporarily relieve some symptoms, but their effectiveness decreases over time. Additionally, as the disease progresses, the side effects of these medications can become more severe and potentially harmful.

While the medications may provide some help, your care, , and understanding for your loved one are the most critical factors in their well-being.

Potential Side Effects

When your loved one begins dementia medication, it's essential to be aware of potential side effects. These effects can vary from person to person, but knowing what to watch for will empower you to support them better. Here are the common side effects associated with each medication:

Donepezil (Aricept®):

  • Agitation and Anxiety: Increased restlessness or nervousness.
  • Gastrointestinal Effects: Nausea, vomiting, or changes in appetite.
  • Headache and Dizziness: Headaches or dizziness.

Galantamine (Razadyne®):

  • Confusion and : Confusion or false beliefs (delusions).
  • Gastrointestinal Discomfort: Nausea and vomiting.
  • Dizziness: Lightheaded.

Rivastigmine (Exelon®):

  • Paranoia: Suspicious or overly cautious.
  • Gastrointestinal Symptoms: Nausea and diarrhea.
  • Headache and Dizziness: Headaches or dizziness.

Memantine (Namenda®):

  • Aggression and Mood Changes: Increased irritability or aggression.
  • Gastrointestinal Upset: Nausea and vomiting.
  • Dizziness: Dizzy and unsteady.

Lecanemab (Investigational Drug):

  • Infusion-Related Reactions: Shortness of breath, fever, chills, joint pain, nausea, vomiting, or dizziness during or after receiving the medication through an IV.
  • Amyloid-related Imaging Abnormalities (ARIA) are swelling or small areas of bleeding in the brain that can be detected on brain scans. These can lead to death, headaches, vision problems, or confusion.
  • Headache: Headaches.
  • Other Side Effects: Diarrhea, lymphopenia, cough, atrial fibrillation, and back pain.

What to Do as a Caregiver

Observe Closely: Pay attention to any changes in behavior or physical discomfort.

Document: One helpful tool I often recommend is keeping a simple journal to track any changes or side effects you notice. can make a big difference in your loved one's care. By recording the effectiveness of medications and any side effects, you can have more meaningful discussions with their doctor. This information can help the healthcare team provide better guidance and support. In addition to tracking medications, your journal can also document the progression of the disease over time. It can be incredibly valuable for healthcare providers to review and understand the unique challenges your loved one is facing. It allows them to tailor the care plan to your loved one's needs. Keeping a journal isn't just helpful for the medical team – it can also be a valuable resource for you as the caregiver. Writing down your observations and experiences can be a therapeutic way to process the emotions and challenges of the dementia journey. It can clarify and help you feel more in control during this difficult time.

Navigating Long-Term Medication Use

As we continue our journey through , let's explore an essential aspect: the impact of long-term medication use.

The Road of Time

Imagine dementia medications as companions on a winding road. Initially, they arrive with promises—like a warm handshake from a friend. But as time passes, their effects may shift. Let's talk about why:

Familiarity Breeds Changes:

  • Medications can evolve just like a favorite sweater that fades over the years. The body adapts, and what once felt new becomes part of the routine.
  • Side effects may become more common the longer the person is on the medication. It's like a dance—the longer they stay, the more intricate the steps.

The Tug of War:

  • Medications aim to slow down dementia's progression, but they're not magic wands. They balance benefits and challenges.
  • Side effects may linger or intensify over time. It's essential to pay attention and communicate openly.

The Art of Tapering:

  • Sometimes, the road forks. You might wonder, “Is this still worth it?” That's okay.
  • Tapering off medications becomes an option. Like easing into a warm bath, it's done gradually—with guidance from healthcare providers.

Your Compassionate Choice

As a caregiver, you hold the compass. Here's what to consider:

Quality of Life:

  • Ask: Are the side effects affecting your loved one's daily life? Is the balance shifting?
  • Remember: Quality matters. If side effects outweigh the benefits, explore alternatives.

Open Conversations:

  • Talk to the Doctor: Share observations. Discuss concerns. They're your co-pilots. Remember, you are the pilot; you are in charge!
  • Together: Decide whether to continue, adjust, or explore new routes.

Patience and Grace:

  • Be Kind: To yourself and your loved one. It's okay to question, adjust, and seek clarity.
  • Embrace Change: Like seasons, our choices evolve. It's part of the journey.

Considerations of Care

Agitation and Anxiety:

  • Sometimes, dementia medications can stir restlessness or nervousness. Watch for signs of increased agitation.
  • Tapering Tip: If these side effects become overwhelming, consider discussing a gradual reduction in medication dosage with the healthcare provider.

Confusion, Delusions, and Paranoia:

  • Galantamine and other medications may occasionally lead to confusion or false beliefs (delusions).
  • Tapering Tip: If your loved one experiences distress due to these symptoms, explore the possibility of tapering off the medication under professional guidance.

Gastrointestinal Effects:

  • Nausea, vomiting, or changes in appetite can occur with cholinesterase inhibitors.
  • Tapering Tip: Gradual reduction allows the body to adjust more smoothly. Abruptly stopping high-dose medications is not recommended.

Why Tapering Matters

  • Quality of Life: If side effects diminish your loved one's quality of life, it's essential to consider discontinuation.
  • No Observable Benefit: As dementia progresses, medications may lose effectiveness. Discuss tapering options with the healthcare team if there's no clear benefit.

How to Taper Off Medications Safely

  • Gradual Reduction: Medications should be discontinued gradually and one at a time.
  • Close Monitoring: Observe closely during the tapering process. If you notice a significant decline in cognition or behavior, consult the physician promptly.
  • Restarting if Needed: Don't hesitate to ask the doctor about resuming the medication if symptoms worsen.

Remember, you're not only managing side effects but also providing care, , and understanding. Reach out to support groups and other caregivers—your shared experiences can be a lifeline.

Conclusion

As we conclude this guide, I want to extend my heartfelt support to you—the family members and caregivers who walk alongside those with dementia.

Stay Informed

Remember, knowledge is your ally. Keep learning about dementia, its medications, and the ever-evolving care landscape. Seek reliable sources, attend support groups, and stay curious. Each information you gather is a stepping stone toward better understanding and compassionate caregiving.

Open Communication Matters

Your voice matters. Talk openly with healthcare providers. Share your observations, concerns, and hopes. They're not just doctors; they're partners in this journey with the understanding you are in charge. Your input is invaluable in adjusting medication doses, exploring alternatives, or discussing side effects.

Embrace Moments of Connection

Amid the challenges, find joy in small moments. A smile, a shared memory, a comforting touch—these threads that weave your caregiving tapestry. Cherish them. Celebrate the victories, no matter how small, and know you're making a difference.

Self-Compassion

Caregiving can be both rewarding and draining. Be kind to yourself. You're doing your best, even on the tough days. Seek respite when needed, recharge your spirit, and remember that self-care isn't selfish—it's essential.

Community and Support

You're not alone. Connect with other families facing similar challenges. Share stories, exchange tips, and lend a listening ear. Together, we create a web of understanding and compassion beyond borders.

Final Words

As the sun sets on this guide, know you're part of a resilient community that cares, learns, and loves. May your journey be filled with grace, patience, and moments of unexpected beauty.

Thank you for being there—for your loved ones and each other.

Resources

Starting, Stopping Drug Therapy for Dementia

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The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer's Disease and Other Dementias

Dementia Home Care: How to Prepare Before, During, and After

The Dementia Caregiver's Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout

Fading Reflection: Understanding the complexities of Dementia

Dementia Caregiving: A Self Help Book for Dementia Caregivers Offering Practical Coping Strategies and Support to Overcome Burnout, Increase Awareness, and Build Mental & Emotional Resilience

Navigating the Dementia Journey: A Compassionate Guide to Understanding, Supporting, and Living With Dementia

Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers

Four Common Mistakes by Caregivers of Loved Ones with Dementia and What Do Differently (video)

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

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My Aging Parent Needs Help!: 7-Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver's Guide to Finding Freedom in the Midst of Overwhelm

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Everything Happens for a Reason: And Other Lies I've Loved

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Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

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Unlocking the Power of Validation Therapy in Compassionate End-of-Life Care

Validation Therapy: A Valuable Tool for Families and Healthcare Teams

Best Practices for Approaching Combative Dementia Patients

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As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

How Do I Know You? Dementia at the End of Life

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What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

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