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Lewy Bodies Disease and Parkinsons Dementia

Updated on May 4, 2016
Parkinsons disease - Lewy Bodies Dementia - Understanding what you face together.
Parkinsons disease - Lewy Bodies Dementia - Understanding what you face together. | Source

Lewy bodies disease (sometimes mistaken to be spelled Louie bodies dementia) is a progressive degeneration of cognitive function in elderly patients and is closely related to Parkinson’s Disease. If someone you love is diagnosed with Lewy bodies dementia, you might be heartbroken and left wondering what you can expect in the coming months.

LBD is the acronym that refers to Lewy bodies disease but is a sort of all-inclusive term for Parkinson’s disease dementia and the dementia that includes Lewy bodies present in neurons within the patient’s brain. Such a diagnosis can be scary for loved ones facing such a disease because it is almost like being told that their loved one will no longer be the person that they love.

Calm down and take a deep breath. LBD is not a death sentence and the person you love can be around for quite a while after a diagnosis of Lewy bodies.

Lewy bodies dementia and parkinsons disease.
Lewy bodies dementia and parkinsons disease. | Source

Lewy Body Dementia - What Is It?

The causes of Lewy bodies dementia are not understood very well by science, but the mumbo jumbo of scientific explanation relates it to the PARK11 gene which is what links Lewy bodies and Parkinson’s Disease to each another so thoroughly. The two are so closely linked that LBD is an umbrella term to describe Parkinson’s Disease Dementia and the dementia associate with Lewy bodies.

Lewy bodies is the term for abnormal protein inclusions in the brain (alpha-synuclein) which, in layman’s terms, reduces important dopamine productive neurons and results in the signs an symptoms of Parkinson’s Disease and Lewy bodies dementia.

Although the symptoms of the two very distinct malfunctions of the human brain differ in a lot of ways, the two are similar issues relating to dopamine producing neurons and a lack of dopamine in the brain.

In progressed DLB the brain shrinks in size as the cerebral cortex degenerates. Studies have shown that the pathology of Lewy bodies disease often coexist with Alzheimers pathology in the hippocampus segment of the brain. In fact, Lewy bodies dementia is considered by some scientists to be a possible Alzheimer’s variation.

No matter the causes or how well scientists really understand it, Lewy bodies is a devastatingly scary diagnosis for the loved ones of anyone facing it. The first step to battling the disease is coming to terms with it and trying to focus on the love between you and the diagnosed patient.

Living with Lewy Body Dementia

Lewy Bodies Dementia

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The Stages of Dementia with Lewy Bodies

The symptoms of early dementia will vary from patient to patient, but the impact on their loved ones is always the same. Learn about the signs and symptoms of Lewy bodies dementia at every stage may help in living with the diagnosis and to understand that it is not that unusual. Your loved one is not in control and they most definitely are not going crazy. The stages of dementia come with different levels of the signs of the disease and knowing them help to prepare for them.

*It is important to note that the stages of dementia vary in length according to the individual. Also, a person diagnosed in their 60’s will live longer than someone diagnosed in their 90’s. Dementia and its symptoms are very much based by the individual.

Early Lewy Bodies Dementia

The core features of the stages of dementia do vary between patients but these are some of the more common signs that begin hardly noticeable by anyone around the person suffering from them and then grow to a stronger presence that changes the person to a more noticeably afflicted person.

Fluctuating Cognition:

  • Loss of alertness
  • Drifting attention
  • Hallucinations
  • Tremors
  • Loss of Coordination
  • Rapid eye movement
  • Abnormal PET or SPECT
  • Sleep habits change

The very early stages of dementia may even go unnoticed by the person having them. Often times the patient believes they are simply suffering from age relate loss of cognitive sharpness but the truth is that the human brain simply does not lose sharpness without an underlying cause. Whether a very small cause that is not going to amount to much change, or a cause that will snowball into something as serious as the last stages of dementia, a person should alert their doctor of any change in cognitive function.

Middle Lewy Bodies

As their dementia progresses, the severity of the condition becomes more pronounced. The dementia patient will require more in depth attention in order to make every day living more comfortable and more support will make their life easier. The dementia patient may become more solitary and withdraw due to lack of confidence and frustration. Some may become prone to argument and become agitated more easily.

  • Forget recent events
  • Lose interest in television or reading due to inability to follow along
  • Become lost or forget locations within their own home
  • Become confused when dressing or showering
  • Forget to eat and drink
  • Lose ability to manage money or cook and clean
  • Start believing hallucinations or dreams
  • Agitation becomes more prevalent
  • Lose track of time
  • Change in sleeping habits

The middle stages of dementia with Lewy bodies most often is the more lengthy stage of the disease. The caretaker must be prepared with as much help as they can provide. The caretaker mustn’t delve into argument, but rather agree to disagree and allow the dementia patient their thoughts and beliefs without adding anything to them.

Latter Stages of Dementia

The end stages of dementia are the patient’s most needful time. This is the lost stage and the caretaker must be ready to care for the patient’s every need. In the end stages of Lewy bodies dementia, the patient may become physically frail as their body begins to succumb to age and inability to reason.

  • Becomes frail and weak
  • Difficulty walking or even standing
  • Difficulty eating and swallowing food
  • May become bedridden
  • Difficulty recognizing family
  • Often incontinent
  • Restless, lost, searching for something or someone

With the diagnosis of dementia, the patient’s life can be as long as anyone else’s. Dementia is a condition of the brain. With proper care taking and support, the dementia patient may live for a very long time.

Parkinsons disease - Lewy bodies disease - Learn how to face it
Parkinsons disease - Lewy bodies disease - Learn how to face it | Source

Lewy Bodies Facts

Here’s what you should remember about Lewy bodies dementia and its management.

  • It’s about lack of dopamine in the brain.
  • Symptoms vary.
  • There are treatments.
  • Your loved one is still alive.
  • Love makes it easier.
  • See your doctor often.

Managing The Stages of Dementia

Though there is no cure for dementia with Lewy Bodies, a diagnosis comes with a lot of hope. More hope today than was the case years ago. When facing the stages of dementia, your relationship with the diagnosed is not over, in fact, you will only grow closer in your love for the person. Don’t get me wrong, it is a hard road you’ve stepped upon but the person is not gone and may be unchanged on a lot of days for some time to come.

There is hope in modern Lewy bodies management. There is no cure but there are a lot of ways to reduce severity and to manage the disease’s speed and seriousness, so don’t be scared and do not be discouraged. Your loved one will be around for some time with these different dementia management tactics.

Pharmaceutical Management

Drugs are used to create a balance between body and mind. Motor coordination and cognitive functions that deteriorate as Lewy bodies begin to intrude upon the brain need to be treated, as is the case with any dementia and in any of the stages of dementia. Some of the drugs are the same with Lewy bodies as with Alzheimer disease and Parkinson’s.

A list of possible pharmaceutical treatments:

  • Aricept
  • Ritalin
  • Exelon
  • Reminyl
  • Memantine
  • Levocarb
  • Clonazepam

Lewy Bodies Disease

Caregiving with Lewy Bodies Dementia

The disease as no known cure which means that inevitably the patient will decline to a point to need 24 hour a day and 7 day a week caregiving. This latter end of the stages of dementia is what scares most loved ones the most.

These tips will help prepare you for the end stages of dementia so when those days arrive, the patient and their loved ones can be closer and not have troubles that will arise from lack of preparation.

Adapt the Home – If the house already proves to be hard to navigate, adjust the rooms to be easier to walk through without falling over things because if the patient is having trouble now, it will only get worse then.

Ask the Patient What They Like – Find out what things the patient loves most and schedule time to interact with them while doing these things. Create a schedule that you stick with from the early stages of dementia to the end ones. Familiarity ingrains itself in a person and the things that make them smile now will help them and you later.

Learn Their Communication Gestures – A lot of times, someone suffering from dementia will be inside but unable to communicate physically what they want or need. Create a system of gesture to aid communication during the final stages of dementia.

Good Days and Bad Days

Those that suffer from dementia will swing from very alert days of hardly any noticeable signs that they suffer from dementia, to days where they can hardly take a step unassisted and might not know where they are or who you are.

Just remember that on those bad days, tomorrow might bring them back to you as the person you know well. Every day has that hope and you should remain positive.

Dealing With Hallucinations

Don’t disavow the patient from their hallucinations, especially if the hallucination is not causing any harm or agitation. It is recommended that the caregiver give a benign neglect approach to hallucinations. Simply put, acknowledge but do not encourage or agree in any way. Trying to correct the delusion is unhealthy for the patient and caregiver and may lead to argument or discouragement in both.

Stick With Your Routine and Environment

Veering off course causes agitation and severe agitation in dementia patients. Stick with your written schedule in order to avoid troubles better left avoided. Let the patient have what they want as long as it is not harmful to them. Even small changes can disrupt the dementia patient’s life enormously due to their intense emotional reactions.

The stages of dementia need caring hands.
The stages of dementia need caring hands.

Lewy Bodies Conclusion

It is a rough path that has been chosen for you and your loved ones. Do not lose hope and do not be discouraged. You are not alone. Around 1.3 million families are on that same path. Staying positive not only helps you but it also helps the dementia patient.

There is no cure but that does not mean that your loved one’s life is over. Learning to live with all the stages of dementia and never fretting what will become of the person you love are some big challenges to overcome but you have faced many before and will face many again.

Just love each other and take what time you have to ask questions and get closer to the person suffering with Lewy bodies disease and know that they are just entering into their new self and are still there for you to love and to love you.

Keep the faith and stay strong, there has never been a time in the patient’s life that they needed you more. Be there and stay positive and their life and your life will be the better for it.


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    • ladyguitarpicker profile image

      stella vadakin 

      4 years ago from 3460NW 50 St Bell, Fl32619

      Hi, Thanks for all the information in your article. Question What is the % of Parkinson's Patience that get dementia? Thanks, Stella


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