Caring for someone with Lewy body dementia (LBD) changes your life in ways you never expected. As an LBD caregiver, you’ll watch the person you’ve known for years act differently, need help with things they used to do independently, and experience symptoms that can shift dramatically from one hour to the next. You’re learning to be a caregiver while dealing with your own grief about watching someone you love change.

Some days you’ll do everything right, and it still won’t be enough. You’ll lose your patience. You’ll cry in the bathroom. You’ll sometimes wish it would just end. And you’ll feel guilty for all of it. This is the reality of LBD caregiving that nobody talks about enough.

Lewy body dementia presents unique challenges that differ from other types of dementia. The fluctuating symptoms, visual hallucinations, movement problems, and medication sensitivities require specific approaches. This guide provides practical strategies for managing daily care, protecting your loved one’s safety, and taking care of yourself through this difficult journey. 

Please note that not every strategy will work every time, but having options helps.

What Makes Caregiving for Lewy Body Dementia Different?

Caring for someone with Lewy body dementia isn’t the same as caring for someone with Alzheimer’s disease or other types of dementia. The biggest difference? Unpredictability. While Alzheimer’s typically follows a gradual, somewhat predictable decline, LBD keeps you constantly adjusting.

Your loved one might seem completely fine at breakfast, engaged in conversation, and able to handle their morning routine independently. By lunch, they can’t remember your name and need help with basic tasks. Two hours later, they’re mostly back to normal.

The constant back and forth is exhausting in a way that steady decline isn’t. You can’t settle into a routine because the routine that worked yesterday fails today. You’ll cancel appointments and reschedule visits repeatedly. Eventually, you’ll notice some patterns. Mornings might be better. Late afternoons might be harder. But just when you think you’ve figured it out, everything shifts again.

Hallucinations appear early and frequently, unlike in Alzheimer’s, where they’re rare. Your loved one sees children, animals, or objects that aren’t there. These aren’t vague shadows. They’re detailed and real to them. The first time your husband talks to someone who isn’t in the room, you freeze. Do you correct him or play along? You aren’t prepared for this.

Movement problems appear alongside the cognitive changes, not years later. Balance issues arise and falls can happen without warning. You start installing grab bars, improving lighting, and removing anything that may be an obstacle.

Then there’s the medication issue. Many drugs that help other people with dementia can be dangerous for people with LBD. Emergency room health care professionals often don’t know this. You’ll find yourself in a hospital at 2 am explaining to a physician why they can’t give your loved one a particular antipsychotic like haloperidol (haldol). Many neurologists advise that you tell the staff that your loved one is allergic to this medication.)  You become the advocate/expert whether you want to or not.

What makes LBD different is dealing with everything simultaneously. Cognitive changes, hallucinations, fall risks, and medication dangers all happening at once, all unpredictable. Other dementias progress in stages. LBD doesn’t give you that clarity.

Daily Care Strategies That Actually Work

Managing daily activities with Lewy body dementia requires adapting your approach based on what you’re seeing each day.

Working with Fluctuating Abilities

1. Schedule important activities, medical appointments, and complex tasks during the times when your loved one is typically most alert. For many people with LBD, mornings tend to be better, though this varies. Keep a simple log for a week or two to identify their best times of day.
2. Fatigue makes everything worse. Build rest periods into the daily schedule, even if they seem fine. Regular breaks can help to prevent the exhaustion that intensifies symptoms.
3. During difficult periods, break tasks into smaller steps. Instead of “get ready for the day,” try “let’s brush your teeth” followed by “now let’s get dressed.” During better periods, they might manage these tasks with minimal help.
4. Have backup plans for everything. If today isn’t a good day for that shower or doctor’s appointment, be ready to reschedule. Forcing activities during difficult periods creates frustration for everyone and often fails anyway.

How Do You Handle Hallucinations in LBD?

Don’t argue about whether the hallucinations are real. Your loved one sees these things as clearly as they see you. Saying “there’s nothing there” or “you’re imagining things” doesn’t make the hallucinations stop and often causes distress.

Instead, acknowledge what they’re experiencing without reinforcing it. For example, if your mother says she sees children in the corner and seems worried, you might say, “I know you’re seeing children and they’re worrying you. I don’t see them, but let’s move to the kitchen where you might feel more comfortable.”  At other times, it may be helpful to say, “I will ask them to leave now.”

Check for environmental triggers. Hallucinations often get worse in dim lighting, around busy patterns, or in cluttered spaces. Improving lighting throughout the house, especially in hallways and bathrooms, can reduce these episodes. Remove or cover mirrors if reflections trigger disorientation.

When hallucinations become distressing, gentle redirection often works. Suggest a different activity, move to another location, or play music they enjoy. Not all hallucinations need intervention. If your loved one sees a friendly cat that doesn’t bother them, there’s no need to correct this. 

Handling Movement and Balance Issues

Assume fall risk is always present, even when they’re moving well. Install safety modifications where possible.

When they need to stand, walk, or change positions, give them time to move at their own pace.

Encourage regular physical activity during good periods. Walking, gentle stretching, or simple exercises help maintain mobility and reduce stiffness. 

Watch for freezing episodes where they suddenly can’t move their feet. Visual cues can sometimes help restart movement. Try having them step over a line, follow a pattern on the floor, or march to a rhythm.

Clear Communication

Speak clearly and give them time to process what you’ve said. Wait for responses instead of repeating immediately or assuming they didn’t hear you.

Use simple, direct language during confused periods. “Let’s eat lunch” may work better than “Would you like to come to the kitchen and have some of the soup I made?”

Before important conversations, minimize distractions. Turn off the TV, radio, or other background noise. Maintain eye contact. These adjustments help them focus on what you’re saying.

Watch their nonverbal cues. Facial expressions, body language, and tone often communicate more than words.

Avoid testing their memory or asking questions for which you already know the answe. “Do you remember what we did yesterday?” puts them on the spot. Instead, share information: “We had a nice visit with Sarah yesterday.”

Managing Medications Safely

People with Lewy body dementia can have dangerous reactions to traditional antipsychotic medications such as haloperidol. These drugs, sometimes prescribed for agitation or behavioral issues in other types of dementia, can cause extreme sedation, dramatic worsening of movement problems, severe confusion, and dangerous drops in blood pressure in people with LBD.

Other medications require caution too, including certain anti-nausea drugs, some muscle relaxants, and anticholinergic medications found in many over-the-counter sleep aids and allergy medicines.

Protecting Your Loved One from Dangerous Medications

Keep a current medication list that includes the LBD diagnosis prominently displayed. Carry copies to all medical appointments. Consider a medical alert bracelet or wallet card that lists the diagnosis and medication sensitivities. They should never be given halperidol (haldol).

Before any new medication is prescribed, specifically ask the doctor if it’s safe for people with Lewy body dementia. Many doctors aren’t familiar with LBD sensitivities, so you need to speak up.

Be especially vigilant during emergency room visits or hospital stays, as ER staff often aren’t trained in LBD.

Watch for side effects when starting any new medication. Even drugs considered safe for LBD can cause unexpected reactions. Contact the doctor immediately if you notice increased confusion, worsening movement problems, or changes in consciousness after starting a new medication.

Organizing Daily Medications

• Use a pill organizer to prevent missed doses or double-dosing. Fill it weekly during a time when you’re not rushed or distracted. 
• Set phone alarms for medication times because consistency matters for effectiveness.
• Keep a simple log of when medications are given, especially if multiple people help with care. This prevents confusion about whether a dose was already given or not.
• Store medications securely. Confusion episodes can lead to taking medications incorrectly if they’re easily accessible.

Creating a Safe Home Environment

Modifying your home reduces risks and makes daily life easier for both of you. Start with the areas that pose the greatest danger.

Preventing Falls

Remove tripping hazards:

• Secure loose rugs with non-slip backing or, better yet, remove them entirely
• Tape down electrical cords or run them behind furniture
• Clear clutter from walkways
• Remove furniture with sharp corners from main traffic areas

Improve lighting everywhere, especially in areas used at night. Motion-sensor nightlights in hallways and bathrooms help with nighttime navigation. Consider leaving bathroom lights on at night rather than requiring them to find a switch in the dark.

Install safety features like grab bars near toilets and in showers or tubs. Place handrails on both sides of all stairs. Make sure they’re securely installed and can support full body weight.

Arrange furniture to create clear, wide pathways. Remove or secure furniture that might tip if they lean on it for support.

Mark step edges clearly with a strip of bright tape to make them more visible and reduce fall risk.

Adapting the Bathroom

Safety modifications:

• Raise toilet seats with risers to make sitting and standing easier
• Install a shower chair or bench (standing in the shower increases fall risk)
• Use non-slip mats in tubs and showers, secured properly so they won’t slide
• Consider a bedside commode for nighttime use if the bathroom is far from the bedroom

Bedroom Safety

If your loved one has REM sleep behavior disorder and acts out dreams, make the bedroom safe. Pad sharp corners on furniture. Remove or secure objects near the bed that could cause injury during sleep movements. Consider bed rails or placing the mattress on the floor.

Keep the path from bed to bathroom clear and well-lit. Many falls happen during nighttime bathroom trips.

Kitchen Modifications

• Unplug small appliances when not in use. 
• Consider disconnecting the stove or installing automatic shut-off devices. 
• Lock up cleaning supplies, medications, and other potentially dangerous items such as knives. 
• Label cabinets and drawers.

What to Do When Your Loved One Becomes Agitated

Changes in mood and behavior in Lewy body dementia can be challenging and distressing for both of you. Understanding why these changes occur helps you respond more effectively.

Understanding the Reasons Behind Behavior Changes

Physical discomfort often triggers agitation or mood changes. Before assuming the behavior stems purely from dementia, check for:

• Pain or discomfort
• Hunger or thirst
• Need for bathroom
• Uncomfortable clothing or room temperature

Overstimulation causes problems. Too much noise, too many people, complex environments, or too much activity can lead to agitation or withdrawal. For example, a family gathering with multiple conversations happening at once might overwhelm someone who was fine earlier in a quiet setting.

Medications sometimes cause behavioral changes. If new behaviors appear shortly after starting a medication, contact the doctor immediately.

Responding to Agitation or Anxiety

Stay calm. Your stress increases their stress. Take a deep breath and speak in a calm, reassuring tone. This may be harder on difficult days when you’re exhausted, but it makes a world of difference.  They need to feel safe.

Look for triggers. What happened right before the agitation started? Can you remove or change that trigger?

Redirect attention gently. Suggest a different activity, offer a snack, move to a quieter location, or engage them in a simple, familiar task.

Don’t argue or try to use logic to convince them they’re wrong. Their perception is their reality at that moment. Validate their feelings even if you can’t validate their perception of the situation. For example, if they’re upset because they think someone stole their wallet (which is actually just misplaced), saying “I can see you’re really worried about your wallet. Let’s look for it together” works better than “Nobody stole it, you just forgot where you put it.”

Give them space if they need it, but stay nearby for safety.

Managing Sundowning

Many people with LBD (and Alzheimer’s) experience increased disorientation, agitation, or behavioral symptoms in the late afternoon or evening. This is called sundowning. The reasons aren’t fully understood, but fatigue, changes in light, and disrupted body rhythms all play a role.

Consistent daily routines help reduce the anxiety that contributes to sundowning. When the structure of the day is predictable, there’s less uncertainty to navigate during vulnerable times.

Diet affects evening symptoms more than you might expect. Limit caffeine and sugar, especially after midday. These can contribute to restlessness and sleep problems that make sundowning worse.

As evening approaches, increase lighting throughout the house. The transition from daylight to darkness can trigger disorientation. Don’t wait for them to notice it’s getting dark. 

Plan calm, simple activities for late afternoon. This is not the time for complex tasks, social events, or stimulating activities. If they usually sundown between 4-6pm, structure that time around quiet, familiar routines.

How Do You Know If You’re Burning Out?

Caring for someone with Lewy body dementia is physically and emotionally exhausting. You can’t pour from an empty cup. Taking care of yourself is extremely necessary for providing good care long-term.

Recognizing Caregiver Burnout

Burnout builds gradually as caregiving demands overwhelm your emotional capacity to cope. Watch for these signs:

• Constant exhaustion that sleep doesn’t fix
• Increased irritability or short temper
• Withdrawal from activities you used to enjoy
• Health problems you’re ignoring
• Feeling hopeless or trapped
• Resentment toward your loved one

If you’re experiencing several of these, get emotional support. Talk to a therapist, join a support group, or reach out to people who understand what you’re going through.

Getting the Support You Need

When people ask, “What can I do?” many caregivers are unsure of what to say. You don’t want to burden others. You feel guilty asking for help. You think nobody else can do it right. You worry about what they’ll think if they see the reality of your situation. 

Have specific tasks ready when someone offers help. “Can you sit with mom for two hours on Thursday?” or “Could you pick up groceries?” gives people concrete ways to help. Even saying “I don’t know exactly what I need, but I’m overwhelmed” opens the door for someone to suggest specific ways they can support you.

Support groups for LBD caregivers provide both practical advice and emotional support from people who understand. Look for LBD-specific groups since the challenges differ from general dementia caregiving. Online support groups work when you can’t leave the house or prefer connecting from home.

Professional support from a therapist or counselor helps you process the complicated emotions of caregiving. Many therapists offer telehealth appointments. Online communities and caregiver forums can also provide connection and practical advice when formal therapy isn’t accessible.

Setting Realistic Expectations

You can’t do everything perfectly. You won’t do everything perfectly. Some days will be harder than others. Some strategies that worked yesterday won’t work today. This is the nature of LBD caregiving.

Focus on what matters most. Not every task needs to be completed every day. Safety and basic needs come first. Everything else is negotiable.

Let go of how things used to be. Trying to maintain previous standards for housekeeping, social activities, or routines creates unnecessary stress. Adjust expectations to match your current reality.

Maintaining Your Own Health

If you fall apart, you can’t care for anyone. Schedule and keep your own medical appointments. Don’t skip your healthcare because caregiving takes all your time.

Eat regular meals. Keep easy, nutritious options available for when you’re too tired to cook.

Move your body regularly. Even short walks help manage stress and maintain your physical health. Physical activity also improves sleep quality, which you desperately need as a caregiver.

Sleep when you can. If nighttime sleep is disrupted because your loved one wakes frequently, nap when they nap during the day. Sleep deprivation makes everything harder and affects your judgment.

Stay connected with friends and family. Isolation makes things more difficult. Even brief phone calls or video calls can be helpful.

What Are the Signs You Need More Help?

You’re not getting adequate sleep over extended periods. Chronic sleep deprivation affects your health and ability to provide safe care.

Your loved one needs more physical assistance than you can safely provide. Lifting, transferring, or supporting their full weight risks injury to both of you.

Mood and behavior changes have become unsafe or unmanageable. Aggression, wandering, or behaviors that put either of you at risk require professional intervention.

Your loved one requires supervision around the clock, but you need to work, sleep, or handle other responsibilities.

Moving Forward with Support

Caring for someone with Lewy body dementia is probably one of the hardest things you’ll ever do. The unpredictable symptoms, safety concerns, and emotional toll take their toll. But you don’t have to figure everything out alone.

Connect with others who understand what you’re going through. Learn from people who’ve been where you are. Get professional guidance when you need it. And remember to be kind to yourself through this difficult journey.

Whether you’re looking for practical caregiving advice or just want to talk with someone who understands the unique challenges of LBD caregiving, we’re here to support you.

Our helpline is available every day of the year from 8am to 8pm Eastern time at 516-218-2026 or 833-LBDLINE. You can also reach us by email at norma@lbdny.org.