The Legacy of Lewy Body Dementia

Mom & Me in 1959 When I Was 6 Months Old

I'm posting this in memory of my mother, along with the hope that it will be helpful to someone else and myself in the future. I added myself to that statement because now that I've lived through the nightmare of this disease with her, I must come to terms with the knowledge that I'm at greater risk of having LBD because she had it. 

We were blind-sided by this form of dementia because mom didn't have the classic early onset warning signs such as confusion, forgetfulness, memory loss, etc. She started hallucinating first and the problem was exacerbated by her complete and total belief that the things she saw were real and there was absolutely nothing wrong with her mind. 

Mom was diagnosed shortly after I finally convinced her to stay with me for "a little while" because it was painfully obvious to everyone but her that she should no longer live alone. Four days after she came to my home, she had three back-to-back seizures out of the blue. She was taken to the ER by ambulance and after a couple of days in the hospital, she was diagnosed with epilepsy and "advanced" LBD. She did not accept the diagnosis, but I insisted that she continue to stay with me. Nine months later, she passed away.

The following information explains LBD and the numerous symptoms mom experienced...

OVERVIEW 

Lewy Body Dementia, also known as Dementia With Lewy Bodies, is the second most common type of progressive dementia after Alzheimer's Disease. Protein deposits, called Lewy Bodies, develop in nerve cells of the brain regions that control memory, movement (motor control), and thinking and causes a progressive decline in these mental and physical abilities. This protein is also associated with Parkinson's Disease, so people with LBD have similar symptoms such as rigid muscles, slow moment, and tremors. People who have Lewy Bodies in their brain have the plaques and tangles associated with Alzheimer's Disease as well.

SYMPTOMS 

Signs and symptoms of LBD may include:

Apathy: Loss of concern, enthusiasm, interest, and/or motivation.

Capgras Syndrome: A psychological condition, also known as “Imposter Syndrome”.  It is the irrational belief that someone known or recognized has been replaced by an imposter. It could be a caregiver, family member, or friend that has an established relationship with the person. In the case of a caregiver, it can make the job extremely challenging and difficult but not impossible.

Cognitive Problems: Thinking abnormalities similar to Alzheimer's Disease, such as confusion, memory loss, poor attention, and visual-spatial problems.

Depression: A mood disorder that causes persistent feelings of sadness and loss of interest. It affects how you behave, feel, and think, which can lead to a variety of emotional and physical problems.

Fluctuating Attention: Disorganized speech, drowsiness, long periods of staring into space, and long naps during the day due to lack of sleep at night, are possible. 

Hallucinations: This could be one of the first symptoms and may recur quite often. They may include seeing animals, bugs, people, lights, and other things in general that aren't there. Sound (auditory), smell (olfactory), and touch (tactile) hallucinations are possible as well.

Movement Disorders: Signs of Parkinson's Disease (parkinsonism), such as rigid muscles, slowed movement, tremors, and a shuffling walk may occur. This can also cause frequent falls. 

Paranoia: A mental condition characterized by delusions of persecution, exaggerated self-importance, general distrust, and unwarranted jealousy. The person may become suspicious of those around them, even accusing them of infidelity, substance abuse, theft, and other impropriate behaviors.

Poor Regulation of Body Functions (Autonomic Nervous System): Blood pressure, pulse, sweating, and the digestive process are regulated by a part of the nervous system that is often affected by LBD. This can result in bowel issues (constipation), dizziness, and frequent falls as well. 

Psychosis: Agitation, aggression, delusions, depression, hallucinations, sundowning, and wandering are hallmark behavioral and psychotic symptoms in the moderate-to-severe stages of the disease.

Sleep Difficulties: Rapid Eye Movement (REM) is a sleep behavior disorder that can cause the person to physically act out their dreams while sleeping. When the mind and body can no longer distinguish between day and night, sundowning during the night can occur and quite frequently.

RISK FACTORS 

A few things that seem to increase the risk of developing LBD include:

Age: People older than 60 are at greater risk.

Family History: Those who have a family member with LBD or Parkinson's Disease are at greater risk of having it. 

Sex: LBD affects more men than women. 

COMPLICATIONS

Because LBD is progressive, the symptoms will continue to get worst over time. In the final stage of the disease, the person will lose the ability to swallow (throat muscles weaken), talk (vocal chords are affected), and walk (mobility decreases). The average life expectancy is approximately eight years after the early onset of symptoms, but this can vary from person to person.

Mom lived for 19 months after it became obvious to me and other family members, as well as her friends and neighbors, that she was hallucinating. If she had an early-onset stage of the disease, none of us were aware of it or when it occurred—but, it is possible the symptoms were so subtle, they were overlooked.

Unfortunately, not much is known about what causes the protein build up of Lewy Bodies in the brain. At the present time, there is no cure for LBD and nothing can be done to slowdown or stop the progression of the disease once you have it. For all intents and purposes, it is a "death sentence" to every fiber of your being while you're still alive, and that is a possible legacy that scares the hell out of me.