Learning about Lewy Body Dementia for Our Loved Ones

It’s difficult to believe that several years ago I never heard of Lewy Body Dementia. It is the second most common cause of dementia after Alzheimer’s. Although I worked for many years as an RN, I never once came across this diagnosis.

Its very important, in my opinion to get the correct diagnosis for your loved one. There are many similarities amongst the various types of dementia, but there are also many differences. One would not consider putting strep throat and tonsillitis in the same category although the symptoms may be quite similar. That is because the treatment plans are quite different. So too with Lewy Body Dementia. Certain drugs that are helpful to Alzheimer’s patients may in fact be harmful to people with Lewy Body Dementia.

LBD may arrive in two ways. It may start with physical signs such as tremors and other Parkinson-like symptoms, or it can start with confusion and/or forgetfulness. LBD is often confused with Parkinson’s as often there are similar physical limitations and symptoms.

An early sign of LBD is the acting out of dreams. (Of course not everyone that does that is going to get LBD) While sleeping people may talk sing and use hand movements which are sometimes jerky movements as they act out their dreams. Sometimes a spouse may get hurt unintentionally from a strong movement during these dreams.

People with LBD may become an exaggeration of themselves. By this I mean that an anxious person will become more anxious, and a fearful person may become paranoid. There are various medications to relieve these difficult symptoms.

The common denominator among many illnesses that affect our brains is the need to be loved unconditionally. Even in the advanced stages of LBD one is able to feel love, humiliation, anger.  Often people unknowingly belittle and humiliate people that are suffering from some form of dementia. Often people look well physically but they are much slower to process things. That doesn’t mean that they don’t recognize when others are impatient and or the opposite, caring and patient. There are many periods of lucidness even as the disease is advanced. People with LBD are often aware of their surroundings even when they can no longer verbalize their feelings.

No one truly knows by looking at someone with dementia, just how much they understand, even when you think they seem so “out of it”. No one should ever discuss a person right in front of them as though they don’t exist.

In 2006 I recognized that my husband was not well. Although I saw several doctors, it took 2 years for me to get the proper diagnosis.

It took me 2 years to realize that I must see a doctor that specialized in diseases that affect the brain. I found a doctor that would listen to me and after a myriad of tests, he was able to give me a diagnosis. The doctor explained that even with a diagnosis there’s still a 5 percent margin for error.

Its important to note that certain medications that are usually used to calm a patient down may have a paradoxical effect 9 meaning that it does the exact opposite).

My husband was misdiagnosed initially with a seizure disorder. It told me that apparently the EEG of someone with LBD may mimic the EEG of someone with a seizure disorder. Although on rare occasions people with LBD may seize, it is certainly not the same as a person diagnosed with epilepsy. Seizures may be a symptom of the disease, but it is certainly not the cause of the dementia.

For all of the above reasons, and many more, its important for people to learn about LBD . We all need to learn how to live with someone that has LBD in the most dignified way possible.

As researchers work on finding a cure we must not lose sight of the present, and we must learn how we can give our loved ones the best possible years while living with this disease.

Contributor: Hennie Friedman (current caregiver and RN)