Imagine being told you are living with Alzheimer’s disease only to discover you have been misdiagnosed and are suffering from another neurodegenerative condition. At 52 years old, Mike Belleville was diagnosed with early-onset Alzheimer’s. Several years later, he was reevaluated and learned he has Lewy body dementia (LBD), a disease many researchers believe is the second most common form of dementia, affecting an estimated 1.3 million Americans. Belleville is among a number of people who have experienced the pain of misdiagnosis and are living with what the Lewy Body Dementia Association (LBDA) calls “the most misdiagnosed form of dementia.”

While Lewy body dementia and Alzheimer’s share some symptoms, there has not been as much research on LBD, Dag Aarsland, a leading LBD and Parkinson’s researcher from King’s College in London and a director of research at the University of Stavanger’s Centre for Age-Related Medicine, said. He said this lack of awareness about Lewy body dementia and its symptoms causes many doctors to mistakingly diagnose someone with Alzheimer’s. However, Aarsland thinks it should be relatively easy for doctors to tell the difference between the two conditions with the right tools and an extensive conversation with patients and their caregivers about their medical history.  

• Aarsland said that unlike Alzheimer’s, where memory issues are the main symptom until later stages, Lewy body dementia patients often suffer from hallucinations, sleep disorders and gait problems or balance issues early on 
• While there are no medications that can cure Alzheimer’s or LBD, some medications like Aricept may temporarily slow the progression of Lewy body dementia and are often more effective on those with LBD than Alzheimer’s 
• Other medications that are prescribed for Parkinson’s or used to treat hallucinations may help relieve some LBD symptoms as well 

Being Patient spoke to Aarsland about the differences between Alzheimer’s, Lewy body dementia and Parkinson’s, if genetics impact whether or not someone will develop LBD, treatment options and where research on the neurodegenerative condition is headed. 

The Difference Between Lewy Body Dementia and Alzheimer’s

Being Patient: What is the difference between Lewy body dementia and Alzheimer’s disease?

Dag Aarsland: When a pathologist looks into the brain of someone with Lewy body disease versus Alzheimer’s, they see different changes. More importantly, for patients and carers, Lewy body disease often causes behavioral symptoms, whereas it’s more common for Alzheimer’s to cause memory or language problems. With Lewy body disease, we also have memory and language problems, but there are a lot of other symptoms which are also very problematic. These include psychiatric symptoms such as hallucinations, motor symptoms that are similar to those we see in Parkinson’s disease, very specific sleep disorders and a whole list of other changes. It’s a more complex symptom presentation for these patients.

Being Patient: Some people have been diagnosed with early-onset Alzheimer’s only to find out they have Lewy body dementia. Alzheimer’s can be diagnosed with a PET scan or spinal tap by looking at the presence of beta-amyloid plaques or tau tangles in the brain. Does Lewy body dementia present itself similarly to Alzheimer’s in the initial stages?

Dag Aarsland: Yes and no. There are some similarities, but there are also very specific differences. It’s actually not that difficult to diagnose Lewy body disease. In my view, the main challenge is that people don’t know a lot about it. Doctors don’t consider Lewy body disease as a potential diagnosis and they don’t ask the questions or do the examinations that are required to make a diagnosis.

How Can Doctors Diagnose Lewy Body Dementia?

Being Patient: How can doctors accurately diagnose someone with Lewy body dementia?

Dag Aarsland: As always, the most important thing is to talk carefully with a patient and carer who knows the patient and discuss what symptoms they have experienced. Doctors should ask whether they are having hallucinations, as well as whether they have tremors, slow movements, gait problems or balance issues. If the symptom profile resembles Lewy body disease, then we have some imaging and tests that can be used to secure the diagnosis, although it’s not mandatory. You can make the diagnosis by just interviewing and examining the patient.

Being Patient: Those living with Alzheimer’s often experience hallucinations in the later stages. With Lewy body dementia, do patients experience hallucinations early on?

Dag Aarsland: They do happen early on. With some patients, they may be the first symptom, but usually, patients have memory or other cognitive problems and hallucinations. Hallucinations in a person with very early dementia or even before dementia should make doctors suspicious that the patient does not have Alzheimer’s disease, but Lewy body disease.

READ MORE: https://www.beingpatient.com/difference-between-lewy-body-dementia-and-alzheimers/