Lewy Body Dementia

Everyone has proteins in their body, including ones called Lewy body proteins. These particular proteins can clump together in your brain cells (neurons) and damage the areas that control your mental capabilities, behavior, sleep and movement. When this happens, it’s called Lewy body dementia.

Lewy body dementia has two types: dementia with Lewy bodies and Parkinson’s disease dementia (PDD). Dementia with Lewy bodies begins with changes to your thinking, while Parkinson’s disease dementia mostly starts with changes to your movement. There’s no cure for either type of Lewy body dementia, but the disease can be managed as it progresses.

It’s important to work with experienced healthcare providers who understand what it takes to diagnose Lewy body dementia and figure out which type you have and how it affects you. It’s often first diagnosed as Parkinson’s disease or Alzheimer’s disease.

Being able to confirm a correct diagnosis means you can have treatments tailored to your needs and symptoms. It can also help you better understand how the disease may develop in the future.

What to expect at your first appointment

During your first visit, your care team will likely ask you a lot of questions about your symptoms and how they’re affecting you. What symptoms are you having? When did you first start noticing them? Are they getting worse?

We’ll look for a history of decline in thinking that interferes with your daily activities. And we’ll also look for two of the four symptoms that allow us to consider Lewy body dementia as a probable diagnosis — changes in behavior and thinking, visual hallucinations, Parkinsonism and rapid eye movement (REM) sleep behavior disorder, which can cause acting out dreams in your sleep.

You’ll also be asked to talk about your medical history. And your provider will do a thorough physical exam. We’ll get blood tests and imaging tests like:

• Thyroid blood tests.
• Vitamin B12 level tests.
• Magnetic resonance imaging (MRI).
• Computed tomography (CT) scans.

The results from these tests can help us rule out other conditions that have similar symptoms. We’ll then do other testing to further pinpoint what’s going on.

Neurological testing

To test your thinking and memory skills, we’ll ask you to do cognitive testing so we can see how well you can find words, remember things and pay attention to directions. It can also help us see how well you process information, use reasoning and understand what people are saying to you, among other things. A neurological exam looks for signs of Parkinsonism-related changes that are often seen in Lewy body dementia.

Sleep studies

Sleep problems are a hallmark of Lewy body dementia. So there’s a good chance we’ll ask you to do advanced sleep studies so we can look for rapid eye movement sleep behavior disorder. This can cause you to act out your dreams while you’re sleeping. You’ll sleep in a comfortable lab overnight so we can check your heart, brain activity, breathing patterns, body movements and more.

Meet Our Lewy Body Dementia Team

If you choose Cleveland Clinic for the diagnosis and treatment of your Lewy body dementia, you’ll have an expert care team of healthcare providers from different specialties. This team is experienced in doing in-depth testing to diagnose this condition. Skilled neurologists will lead your care team, which could also include:

• Psychologists, specializing in brain disorders.
• Psychiatrists.
• Social workers.
• Radiologists.
• Physical and occupational therapists.

No single test can diagnose Lewy body dementia with complete certainty. But having a team of experts from different specialties working with you means we’ll team up to confirm the most accurate diagnosis.

Lewy body dementia has no cure, so we focus on managing your symptoms, improving your quality of life and keeping you comfortable and safe.

Your care team will use what they learned in your physical exam and testing to craft a treatment plan that addresses your individual symptoms and needs. As the disease worsens, your treatment may change, so we’ll make sure your care team and plan are flexible enough to adapt over time.

Medications

Your care team understands what it takes to manage Lewy body dementia with medications. We know how each drug works — and how it may influence your symptoms. Together, we’ll find the option that works best for you.

Taking medication for Lewy body dementia can improve your thinking ability (cholinesterase inhibitors), reduce hallucinations (pimavanserin) and control motor symptoms (carbidopa-levodopa). They can also help you sleep at night or keep you awake during the day. Other drugs help ease anxiety or depression. Additionally, you may need medications to regulate parts of your nervous system, which controls things like blood pressure and digestion.

Therapies for your brain and body

We’ll also recommend that you take part in different neurorehabilitation therapies. These can help preserve your mental and physical abilities as you learn to live with Lewy body dementia. They can include:

• Physical therapy to help with your strength, balance and movement.
• Occupational therapy to make your daily tasks easier.
• Speech therapy to treat speech and swallowing difficulties.
• Music therapy to improve your overall well-being.
• Mental health counseling to help you navigate your emotions and mental well-being.

Support for you and your family

We believe the more you know about Lewy body dementia and its treatment, the better you and your family can cope with this disease. It allows you to make more informed decisions about your treatment and plan for the future.

Cleveland Clinic offers the support you need. Our dedicated social workers help you navigate all aspects of your care. We connect you and your family with hospital, financial and community resources. If needed, we can even arrange palliative care to help make you more comfortable.

We know caregivers also face many challenges when a loved one has Lewy body dementia. That’s why we also offer compassionate support for your loved ones with support groups, counseling and more.

Taking the Next Step

It can be unnerving to face Lewy body dementia’s symptoms and take the next step. But early diagnosis and personalized treatment can really go a long way to improving your quality of life, now and in the future. And we’re here to help you (and your family) move forward to tackle the changes Lewy body dementia brings — from diagnosis and beyond.