Lewy body dementia — the one nobody talks about enough

This article is for educational purposes only and does not constitute medical, legal, or financial advice. Every family situation is different, and you should consult with appropriate professionals about your specific circumstances.

Lewy body dementia is the third most common cause of dementia, after Alzheimer's disease and vascular dementia. But if you mention it to most people, they haven't heard of it. Even people who work with older adults sometimes don't know much about it. That's partly because it's less common than Alzheimer's. It's partly because it's complicated. And it's partly because it doesn't look like what people expect dementia to look like, so it often gets diagnosed as something else until someone finally figures it out.

Lewy body dementia is challenging. It's medically complex. It's behaviorally complex. And there's a medication trap that can make things much worse very quickly if you're not careful. If your parent has been diagnosed with Lewy body dementia, or if you're seeing symptoms that don't quite fit the dementia you thought your parent had, understanding what Lewy body dementia actually is helps you understand what's happening and how to manage it without making things worse.

Why Nobody Talks About It

Lewy body dementia is less common than Alzheimer's. If you line up a hundred people with dementia, maybe five to ten of them have Lewy body dementia. The majority have Alzheimer's. So from a statistical standpoint, it makes sense that most of the conversation about dementia is about Alzheimer's.

But there's another reason people don't talk about Lewy body dementia as much. It's genuinely very challenging to live with. It often progresses faster than Alzheimer's. The symptoms are often more distressing—for both the person and the people caring for them. The hallucinations can be terrifying. The behavioral problems can be extreme. The Parkinsonian features—the difficulty with movement, the rigidity, the slowness—add physical disability on top of cognitive decline. Managing all of this simultaneously is harder than managing Alzheimer's disease, which tends to progress more predictably and slowly.

Lewy body dementia also gets missed or misdiagnosed more often than it should. Someone might be diagnosed with depression because they're depressed and withdrawn. Someone might be diagnosed with Parkinson's disease because of movement problems. Someone might be diagnosed with psychosis because of hallucinations. It takes a doctor who's paying attention to figure out that these things are all symptoms of the same disease.

The Hallmark

The hallmark of Lewy body dementia is vivid visual hallucinations. They're early in the disease, often before significant memory loss. Your parent sees things that aren't there,people, animals, objects. The hallucinations are detailed and often realistic. Your parent might see animals moving around the house. They might see people sitting in chairs or standing in corners. They might see children playing. They might see someone's face floating in front of them.

The critical thing to understand is that these are real to your parent. This is not your parent making things up or exaggerating. This is their brain interpreting visual information incorrectly. The hallucinations seem as real to them as what you're seeing is real to you. Your parent might be terrified. They might try to talk to the people they see or point them out to you. When you tell them they're not real, your parent might not believe you.

The hallucinations can wax and wane. Some days they're barely present. Some days they're constant and terrifying. They often get worse in the evening,a phenomenon called sundowning that happens with other dementias too, but is especially marked in Lewy body dementia.

The other hallmark is Parkinsonian movement features. Your parent might develop a tremor. They might move more slowly. They might become rigid,their muscles tighten and don't relax. They might have a stooped posture. They might shuffle when they walk. They might have difficulty with balance and fall frequently. They might have difficulty swallowing or chewing. These movement problems can be severe enough that they significantly affect your parent's quality of life and independence.

Cognitive decline happens too, but it can look different from Alzheimer's. Short-term memory might be relatively preserved. The thinking problems might be more about attention and processing speed,your parent gets confused easily, has trouble following conversations, takes a long time to process what you're saying. The problems with executive function can be deep,difficulty planning, organizing, problem-solving.

Behavioral problems are common. Your parent might be withdrawn and depressed. They might have anxiety or panic attacks. They might become paranoid or suspicious. They might have inappropriate behaviors,aggression, disinhibition. The behavioral changes can be as disruptive as the hallucinations.

Why It's Misdiagnosed

Someone with Lewy body dementia might be diagnosed with depression because they're withdrawn and depressed. They might be prescribed antidepressants, which might help with the mood, and then everyone assumes it was depression all along. But the other symptoms keep happening,the hallucinations, the movement problems, the cognitive decline,and people start to realize something else is wrong.

Someone might be diagnosed with Parkinson's disease because of the movement problems. And they do have Parkinson-like symptoms. If the cognitive decline happens later, it might be attributed to medication side effects or to an unrelated dementia developing alongside Parkinson's. It takes a careful history and examination to realize the movement problems, cognitive decline, and hallucinations are all part of one disease.

Someone might be diagnosed with psychosis because they're seeing things and saying things that don't make sense. They get admitted to a psychiatric hospital. They get prescribed antipsychotic medications. Then something bad happens.

This is the medication trap. Many antipsychotic medications,the ones used to treat psychosis, hallucinations, and behavioral problems,can cause a severe reaction in people with Lewy body dementia. The reaction can include severe worsening of movement problems, extreme rigidity, high fever, confusion, even death. The antipsychotics that might help someone with Alzheimer's or someone with primary psychosis can be dangerous,sometimes fatally dangerous,for someone with Lewy body dementia.

This is why getting the correct diagnosis matters so much. Misdiagnosis leads to treatment with medications that can make things dramatically worse very quickly.

The Medication Problem

Antipsychotics are used to manage hallucinations and behavioral problems. They work in other dementias by blocking dopamine receptors in the brain. In Lewy body dementia, dopamine is already disrupted,that's part of why the Parkinsonian features exist. Adding antipsychotics on top of that disruption can cause a severe reaction.

The medications most likely to cause this severe reaction are the typical antipsychotics,medications like haloperidol and chlorpromazine. But even the newer antipsychotics,the atypical ones like risperidone and olanzapine,can cause problems in Lewy body dementia, though the reactions are usually less severe.

What happens is severe worsening of movement problems. Your parent might become completely unable to move. Their muscles become incredibly rigid. They might develop a high fever. They might have severe delirium. They might stop eating or drinking. Some people in this state have died.

Even small doses of antipsychotics can trigger this reaction. It's not about how much you give. It's about the medication itself being dangerous in the context of Lewy body dementia.

This is critically important because many people with Lewy body dementia end up being misdiagnosed, get prescribed antipsychotics, have a severe reaction, and then the family doesn't know if they should keep the medication or stop it. The answer is: you need to know for certain whether your parent has Lewy body dementia before treating them with antipsychotics. If they do have Lewy body dementia, antipsychotics should be avoided.

There are other medications that might help manage the hallucinations,like cholinesterase inhibitors,that are safer. There are behavioral management strategies. There are alternative medications. But antipsychotics are not the answer.

What Families Face

If your parent has Lewy body dementia, you're managing multiple complex things at once. You're managing hallucinations,trying to keep your parent safe when they're seeing things that aren't there, trying to comfort them when the hallucinations are frightening. You're managing movement problems,helping your parent walk safely, managing falls, managing swallowing problems. You're managing behavioral problems,aggression, inappropriate behavior, paranoia. You're managing cognitive decline. You're managing mood problems. You're managing sleep problems.

This is a lot. Lewy body dementia is medically complex and behaviorally complex simultaneously. Your parent might need physical therapy for movement problems. They might need speech therapy if they have swallowing problems. They might need psychiatric care for mood and behavioral management. They might need neurology management. They might need geriatric care management. Coordinating all of this is exhausting.

Your parent might progress faster than someone with Alzheimer's disease. Life expectancy with Lewy body dementia is often shorter,five to eight years from diagnosis, though some people live longer. This means less time to adjust, less time to make plans, less time to prepare.

The behavioral management of Lewy body dementia is different from Alzheimer's. With Alzheimer's, you often manage behavioral problems by simplifying the environment and the routines. With Lewy body dementia, behavioral problems might require more active management,medication management that has to be done very carefully, environmental modifications, specialized approaches.

For the hallucinations specifically, you need to decide how to respond. Some families gently try to redirect their parent away from the hallucination,"Mom, those people aren't really there, let's go do something else." Some families validate the experience without endorsing the unreality,"I know you're seeing something that scares you. You're safe." There's no right answer. Different approaches work for different people and on different days.

If your parent has paranoia or suspicion,believing that someone is stealing from them or that people are plotting against them,managing that requires patience and careful attention to not reinforcing the paranoia while still keeping your parent safe.

The physical management is critical. If your parent is having movement problems and falling frequently, you need to prevent falls and manage the consequences of falls. Walkers, grab bars, physical therapy, careful supervision when walking. If your parent is having swallowing problems, you need to be aware of choking risk and might need to modify food consistency.

The most important thing is getting the diagnosis right. Once you know your parent has Lewy body dementia, you know to avoid antipsychotics. You know to approach behavioral and hallucination management differently. You know that what you're seeing is a specific disease with specific patterns, and you're not just dealing with random behavioral problems or unexplained cognitive decline.

How To Help Your Elders is an educational resource. We do not provide medical, legal, or financial advice. The information in this article is general in nature and may not apply to your specific situation. If you are concerned about a loved one's cognitive health or safety, consult with their healthcare provider or contact your local Area Agency on Aging for guidance and support.