Your loved one used to light up when the grandchildren visited. They had hobbies they cared about, opinions they shared freely, plans they looked forward to. Now they sit quietly, showing little interest in anything. They don’t seem sad exactly, but they don’t seem like themselves either. 

What you’re seeing might be depression, apathy, or both. These emotional changes are among the most common symptoms of Lewy body dementia, affecting the majority of people with the condition at some point. They often appear early, sometimes years before the cognitive or movement symptoms that eventually lead to diagnosis.

The challenge is that depression and apathy look similar on the surface but are actually different problems with different causes and different treatments. Understanding what you’re dealing with helps you respond in ways that actually help, and helps doctors choose treatments that address the real issue.

Depression and Apathy Are Not the Same Thing

When someone stops engaging with life, we often assume they may be depressed. That’s a reasonable assumption. But in Lewy body dementia, what looks like depression is frequently apathy, a distinct condition that requires a different approach.

Depression involves emotional pain. A person with depression feels sad, hopeless, worthless, or guilty. They may cry, express negative thoughts about themselves, or talk about life not being worth living. Even when they can’t articulate it clearly, there’s an inner suffering that shows through.

Apathy is different. A person with apathy has lost the drive and motivation to do things, but they’re not necessarily suffering emotionally. They don’t feel sad. They don’t feel much of anything. The engine that used to push them toward activities, relationships, and goals has simply stopped running. If you ask whether they want to go for a walk, visit a friend, or watch their favorite show, the answer is a flat no, delivered without distress or explanation.

Someone with depression might say, “I don’t want to see anyone. I’m terrible company and nobody wants to be around me anyway.” Someone with apathy might say, “I don’t want to see anyone,” and have nothing more to add. The refusal isn’t coming from negative thoughts or emotional pain but from an absence or lack of motivation.

This distinction matters because treatments that help depression don’t always help apathy, and pushing someone with apathy to “cheer up” misses what’s actually wrong.

Why Depression and Apathy Are So Common in LBD

Both depression and apathy occur frequently in Lewy body dementia because the disease directly affects brain regions that regulate mood and motivation.

Depression in LBD isn’t simply a reaction to having a difficult diagnosis, though that certainly is a factor. The Lewy body deposits that characterize the disease accumulate in areas of the brain that produce and regulate serotonin, norepinephrine, and dopamine. These neurotransmitters play essential roles in mood regulation. When the cells that produce them are damaged, depression can result regardless of life circumstances.

This biological basis explains why depression often appears early in Lewy body dementia, sometimes before other symptoms are obvious. Your loved one may have struggled with depression for years before anyone suspected dementia was involved. Looking back, you might recognize that the mood changes were actually the first sign that something was wrong.

Apathy involves different brain circuits, particularly those in the frontal lobes that govern motivation, initiative, and goal-directed behavior. When Lewy bodies accumulate in these areas, the result is a loss of drive that has nothing to do with mood. The person isn’t sad about not doing things. They simply have no impulse to do them.

Both problems are part of the disease itself, not character flaws or choices. Your loved one isn’t being lazy, difficult, or ungrateful. Their brain is no longer functioning the way it used to, and the result is these changes in emotion and motivation that can be so hard to watch.

Recognizing Depression in Lewy Body Dementia

Depression in LBD can look somewhat different than depression in someone without dementia. The symptoms may be harder to identify because your loved one might struggle to express how they feel or might not recognize their own emotional state.

Signs that suggest depression include persistent sadness or a depressed mood that lasts most of the day, nearly every day. Your loved one might cry more easily than they used to, or seem on the verge of tears even when nothing specific has happened. They may express feelings of worthlessness, guilt, or hopelessness, saying things like “I’m a burden” or “What’s the point anymore?”

Sleep changes often accompany depression. Your loved one might have trouble falling asleep, wake up too early, or sleep much more than usual. Appetite changes are common too, with some people losing interest in food and others eating more than normal.

Physical complaints sometimes mask depression in older adults. Your loved one might focus on aches, pains, or fatigue rather than talking about feeling sad. They may visit doctors repeatedly for physical symptoms that don’t have clear medical explanations.

Anxiety frequently accompanies depression in Lewy body dementia. Your loved one might seem worried, restless, or unable to settle. They may express fears about things that didn’t bother them before or need frequent reassurance.

In more severe cases, depression can include thoughts of death or suicide. Take any such statements seriously and contact your loved one’s doctor. Even comments like “I wish I could just go to sleep and not wake up” deserve attention.

Recognizing Apathy in Lewy Body Dementia

Apathy can be harder to identify than depression because it doesn’t involve obvious emotional distress. What you see is an absence rather than a presence.

The hallmark of apathy is reduced initiative. Your loved one stops starting activities on their own. They don’t suggest outings, pick up hobbies, or make plans. If left to their own devices, they might sit in the same chair all day without complaint, not reading, not watching television, not doing anything at all.

Interest and enthusiasm disappear. Things that used to bring pleasure no longer seem to matter. Your loved one might watch their favorite sports team play without any visible reaction to wins or losses. They might look at photos of grandchildren and show no spark of connection. This isn’t the same as being sad about these things. It’s more like these things have become irrelevant.

Emotional blunting often accompanies apathy. Your loved one’s face may show less expression than it used to. Their voice might become flatter, without the usual rises and falls that convey feeling. They may not react emotionally to news that would previously have delighted or upset them.

Reduced conversation is common. Someone with apathy doesn’t initiate conversations and may give only brief responses when others engage them. This isn’t rudeness or anger. There’s simply no drive to communicate.

Self-care often declines. Your loved one might not shower unless reminded, might wear the same clothes day after day, or might not bother eating unless food is placed in front of them. Again, this isn’t depression making them feel unworthy of care. It’s the absence of motivation to take care of themselves.

When Depression and Apathy Occur Together

Many people with Lewy body dementia experience both depression and apathy, either at the same time or at different points in the disease. This combination can be particularly difficult for families because it involves both emotional suffering and motivational loss.

When both are present, you might see someone who expresses sadness or hopelessness but also lacks the drive to do anything about it. They might acknowledge feeling terrible but refuse suggestions that could help, not because they’ve decided the suggestions won’t work but because they simply can’t generate the motivation to try.

Treating both problems simultaneously requires careful attention. Antidepressant medications might help the mood component without touching the apathy. Strategies that work for apathy might not address the underlying emotional pain. A comprehensive approach considers both dimensions.

How Depression and Apathy Differ from Cognitive Fluctuations

Lewy body dementia causes fluctuations in alertness and cognition that can look like depression or apathy but are actually a separate phenomenon. Understanding the difference helps you respond appropriately.

During a cognitive fluctuation, your loved one might seem drowsy, withdrawn, and unresponsive, much like someone with severe apathy. The difference is timing. Fluctuations come and go, sometimes within hours. Your loved one might seem completely checked out in the morning and relatively engaged by afternoon. True apathy is more constant, present day after day at times without the dramatic shifts.

Fluctuations also affect alertness and awareness in ways that apathy doesn’t. During a fluctuation, your loved one might stare blankly, have trouble tracking conversations, or seem confused about where they are. Apathy affects motivation but not necessarily alertness. Someone with apathy might be fully awake and aware but simply uninterested in engaging.

Treatment Options for Depression in LBD

Depression in Lewy body dementia often responds to treatment, which can significantly improve quality of life for both your loved one and your family.

Antidepressant Medications

Selective serotonin reuptake inhibitors (SSRIs) are typically the first choice for treating depression in LBD. Medications like sertraline (Zoloft), citalopram (Celexa), and escitalopram (Lexapro) are generally well tolerated and don’t have the anticholinergic effects that make some antidepressants dangerous in Lewy body dementia.  Mirtazapine (Remeron) also may work well and also helps with sleep and appetite.  It’s important to keep in mind that everyone living with LBD is different and medications may work well for some but not for others.

As with all medications in LBD, antidepressants should be started at low doses and increased slowly. Your loved one’s response may differ from what’s typical, and careful monitoring for side effects is essential.

Tricyclic antidepressants like amitriptyline and nortriptyline should generally be avoided. Their anticholinergic properties can worsen confusion and cognitive symptoms.

Antidepressant effects aren’t immediate. It can typically take several weeks to see improvement, so don’t assume a medication isn’t working after just a few days.

Non-Medication Approaches

Structured activity and social engagement can help with depression even when motivation is low. Regular routines that include pleasant activities, time with supportive people, and gentle physical exercise contribute to better mood.

Exposure to natural light, particularly in the morning, can help regulate mood and sleep cycles. If your loved one spends most of their time indoors, finding ways to increase light exposure may help.

Counseling or therapy can benefit some people with mild to moderate dementia, particularly in earlier stages when communication is still relatively intact. Approaches focus on practical coping strategies rather than insight-oriented talk therapy.

Addressing other factors that contribute to low mood matters too. Pain, poor sleep, medication side effects, and social isolation all make depression worse. Treating these underlying issues can improve mood even without specific antidepressant treatment.

Treatment Options for Apathy in LBD

Apathy is harder to treat than depression. Antidepressant medications often don’t help because apathy isn’t fundamentally a mood problem. Research on apathy treatments in dementia is limited, and no medication is specifically approved for this purpose.

Medications That May Help

Cholinesterase inhibitors like donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne), which are commonly used to treat cognitive symptoms in LBD, sometimes improve apathy as well. If your loved one isn’t already taking one of these medications, starting treatment might help with motivation as well as thinking.

Behavioral and Environmental Approaches

Since medications for apathy are limited, non-drug strategies become especially important.

Structure and routine help compensate for lost initiative. When your loved one no longer starts activities on their own, building activities into a predictable daily schedule ensures they happen anyway. They may not initiate a morning walk, but if walking happens at 9 AM every day as part of the routine, they may participate without resistance.

Simplifying activities increases the chance of engagement. Complex tasks with multiple steps require initiative at each step, which is exactly what apathy impairs. Breaking activities into simple components and providing prompts at each stage can help your loved one participate in things they wouldn’t initiate on their own.

External motivation matters when internal motivation is absent. Your loved one might not care about showering for their own sake but might do it because you’re going somewhere together. They might not want to eat but might participate in a meal because you’re eating with them. Using social connection and gentle expectations as motivators can help maintain function.

Physical activity, even when your loved one doesn’t want to do it, can help reduce apathy. Exercise has effects on brain chemistry and function that may partially compensate for the changes causing apathy. Getting your loved one to move may require persistence and creativity, but the benefits extend beyond physical health.

Music, particularly music meaningful to your loved one, sometimes sparks engagement when nothing else does. Even someone who shows no interest in conversation or activities may respond to familiar songs. Music therapy and simply playing favorite music at home can provide moments of connection.

Living with These Changes

Watching your loved one lose interest in life is painful. The person who used to laugh, plan, hope, and care seems diminished, and you grieve for who they were even as you continue caring for who they are now.

It helps to remember that these changes come from the disease, not from your loved one’s choices. They’re not withdrawing from you on purpose. They’re not ungrateful for your care. The brain systems that generated engagement, motivation, and emotional expression are damaged, and what you’re seeing is the result.

Your presence and care still matter, even when your loved one can’t show appreciation the way they used to. People with apathy may not express enjoyment, but that doesn’t mean your efforts are wasted. Maintaining routines, providing stimulation, and simply being there contribute to their wellbeing even without visible feedback.

Take care of yourself as well. Caring for someone with Lewy body dementia is exhausting under any circumstances. When your loved one can’t provide emotional reciprocity, caregiving becomes even more draining. Support groups, respite care, and connections with others who understand can help you sustain your own wellbeing.

If you’re struggling with your loved one’s emotional changes or have questions about treatment options, our Lived Experience Volunteers are here to help. 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.

FAQ: Depression and Apathy in Lewy Body Dementia

Is depression common in Lewy body dementia?

Yes, depression is very common in Lewy body dementia, affecting an estimated 50 to 60 percent of people with the condition.

What is the difference between depression and apathy?

Depression involves emotional suffering, including feelings of sadness, hopelessness, worthlessness, or guilt. Apathy is a loss of motivation and initiative without emotional pain. Someone with depression feels bad about not doing things. Someone with apathy simply doesn’t care about doing them and isn’t distressed by that lack of caring.

Why does my loved one with LBD seem to have no emotions?

Emotional blunting, where a person shows little reaction to events that would normally trigger feelings, is a common feature of apathy in Lewy body dementia. The disease damages brain regions involved in generating motivation and emotional responses. Your loved one may still have some internal experience that they can’t express, or they may genuinely feel very little. 

Can apathy in Lewy body dementia be treated?

Apathy is harder to treat than depression because it doesn’t respond well to antidepressant medications. Behavioral approaches are often more effective than medication. 

How can I tell if my loved one is depressed or just tired from LBD?

Fatigue and drowsiness are common in Lewy body dementia and can look like depression. Key differences include the presence of emotional symptoms like sadness, hopelessness, or tearfulness, which suggest depression rather than simple fatigue. Cognitive fluctuations in LBD can also cause periods of drowsiness and withdrawal that come and go over hours. If withdrawal is constant and accompanied by negative thoughts or emotional pain, depression is more likely.

Should I push my loved one to do activities when they have apathy?

Gentle encouragement is usually helpful. Someone with apathy won’t initiate activities but may participate once started. Building activities into daily routines so they happen automatically reduces the need for your loved one to generate initiative. Avoid pushing too hard or expressing frustration, as this can cause distress without increasing motivation. 

Can depression in LBD be mistaken for dementia getting worse?

Yes, depression can cause increased confusion, slower thinking, and reduced function that mimics dementia progression. This is sometimes called “pseudodementia.” When depression is treated successfully, cognitive function may improve.

Does apathy mean my loved one doesn’t love me anymore?

No. Apathy affects motivation and the ability to express feelings, not the underlying emotional bonds. Your loved one may still feel love and connection but lack the drive to express it or act on it.

When should I talk to a doctor about my loved one’s mood changes?

Contact your loved one’s doctor if you notice persistent sadness, tearfulness, or expressions of hopelessness. Seek immediate help if your loved one expresses thoughts of death or suicide, even seemingly casual comments like wishing they wouldn’t wake up.