Understanding Dementia: Dementia with Lewy Bodies

"Mom keeps telling me she sees children playing in the living room."

She describes them in incredible detail… What they're wearing, where they're sitting… sometimes she even talks to them.

The family worries she's losing touch with reality, or maybe developing a mental illness.

But what many people don't realize is that well-formed visual hallucinations are often one of the earliest signs of Lewy Body Dementia (LDB) or Dementia with Lewy Bodies.

For families, this diagnosis can feel especially confusing because symptoms often seem to come and go.

One day, your loved one may seem remarkably clear, the next, they may struggle to stay awake, carry on a conversation, or make sense of what's happening around them.

Understanding why these changes happen can help families respond with greater confidence, compassion, and less fear.

What Is Dementia with Lewy Bodies?

Lewy Body Dementia (LBD) is one of the most common forms of dementia, accounting for an estimated 5–10% of dementia cases, although experts believe it is often underdiagnosed.

LBD develops when an abnormal protein called alpha-synuclein builds up inside brain cells. These protein deposits—called Lewy bodies—interfere with the brain's ability to communicate and function normally.

Because Lewy bodies affect several different parts of the brain, symptoms often involve more than memory.

They may affect:

• Thinking
• Movement
• Sleep
• Vision
• Attention
• Mood

This combination of symptoms is one reason Lewy body dementia can initially be mistaken for Alzheimer's disease, Parkinson's disease, or even a psychiatric condition.

What Are the Early Signs?

Lewy body dementia has several symptoms that make it different from other forms of dementia.

A loved one may:

• Experience vivid visual hallucinations, often seeing people or animals that aren't there.
• Have noticeable changes in attention or alertness from one day—or even one hour—to the next.
• Move more slowly, shuffle while walking, or develop stiffness similar to Parkinson's disease.
• Act out dreams during sleep by talking, yelling, punching, or kicking. This is known as REM sleep behavior disorder and can begin years before memory changes appear.
• Have difficulty judging distances or navigating familiar spaces.
• Experience anxiety, depression, or apathy.
• Develop sensitivity to certain medications, particularly some antipsychotic medications.

Memory may be affected, but it is often attention, visual perception, and problem-solving that change first.

What This Means for Caregivers

One of the most difficult parts of Lewy body dementia is its unpredictability.

Some days your loved one may seem completely engage…

They carry on conversations.

They recognize everyone.

They seem almost like themselves.

Then, hours later, they may appear confused, sleepy, or unable to focus.

Families often wonder...

"How can they be so different from one day to the next?"

The answer is that these fluctuations are part of the disease itself.

They are not choosing to be inconsistent, their brain is processing information differently throughout the day.

Visual hallucinations can also be frightening for families.

Your first instinct may be to convince your loved one that what they're seeing isn't real.

But if the hallucination isn't causing fear or distress, reassurance is often more helpful than correction.

Sometimes simply saying,

"That sounds very real to you. I'm here with you."

can be far more comforting than trying to argue with what the brain is experiencing.

How Dementia with Lewy Bodies Affects the Family

Families living with Lewy body dementia often find themselves caring for many different symptoms at once.

There may be:

• Memory changes
• Movement difficulties
• Sleep disruptions
• Hallucinations
• Falls
• Changes in blood pressure

Medical appointments can become more complicated because several specialists may be involved, including neurologists, sleep medicine physicians, physical therapists, and primary care providers.

The emotional toll can also be significant.

Many caregivers describe feeling like they're constantly adjusting to a moving target.

Just when they think they've figured things out… The disease changes.

One of the greatest gifts you can give yourself is permission to ask for help.

No one should have to navigate this diagnosis alone.

Living with Hope

Although there is currently no cure for Dementia with Lewy Bodies, there are many ways to improve quality of life.

Early diagnosis allows families to better understand symptoms, avoid medications that may worsen the condition, and develop a care plan tailored to their loved one's needs.

Physical therapy, occupational therapy, speech therapy, healthy sleep habits, regular exercise, meaningful routines and supportive communication can help preserve function and improve daily life.

Most importantly, remember this:

The hallucinations...

The confusion...

The movement changes...

These are symptoms of a disease.

They are NOT a reflection of your loved one's character.

They are still the same person you've always loved.

Their brain is simply asking you to meet them in a different way.

A Moment for You

If someone you love has recently been diagnosed with Lewy Body, take a deep breath.

You do not have to understand every symptom today.

Start with curiosity.

Replace fear with learning.

And remember...

Some of the most meaningful moments of connection happen when we stop trying to bring someone back to our reality...

And instead, gently meet them where they are.

Questions to Ask Your Doctor

• Could these symptoms be caused by Dementia with Lewy Bodies rather than another type of dementia?
• Should my loved one be evaluated by a neurologist who specializes in memory disorders or movement disorders?
• Are any current medications making symptoms worse?
• Is REM sleep behavior disorder contributing to safety concerns?
• Would physical, occupational, or speech therapy be helpful?
• What can we do to reduce the risk of falls?
• What local resources are available for families living with Lewy body dementia?

References

• Lewy Body Dementia Association. Understanding Lewy Body Dementia.
• National Institute on Aging. Lewy Body Dementia.
• McKeith IG, et al. Diagnosis and Management of Dementia with Lewy Bodies: Fourth Consensus Report of the DLB Consortium. Neurology. 2017.
• Armstrong MJ. Lewy Body Dementias. Continuum (Minneap Minn). 2019.
• Alzheimer's Association. 2025 Alzheimer's Disease Facts and Figures.