About Lewy Body - LBD

Symptoms Common to All Lewy Body Disorders

Fluctuations:

Symptoms and abilities come and go. A person may be able to think clearly one minute and feel confused a few minutes later, may be able to eat without help one day and be unable to hold a spoon the next.

Treatment: Those useful to all Lewy disorders

Cons: The person will usually function better with those other than the normal caregiver, thus a doctor may have difficulty identifying issues and planning treatments. A visiting family member may be convinced that their loved one's condition is not so bad as the caregiver says it is--or that the caregiver is causing the loved one's confusion.

Pros: A person with LBD will have windows of clarity where they can participate as a partner, parent and family member, as in the poem below:

An Old Flame

Yesterday I had a chance encounter

with an old flame.

He was every bit as charming as I remember, 

and I was so glad to see him.


We had dinner together and talked about everything and nothing at all.

It made me feel young again and yes, I even flirted a little.

It was just so nice to spend an evening being “normal”.

I don’t recall exactly when he left. I just looked up and John was gone and Lewy had returned.

Poem by permission from Lynn D.

(Printed in A Caregiver's Guide to Lewy Body Dementia)

Autonomic Nervous System

Autonomic Nervous System (ANS) Dysfunctions:

The autonomic nervous system controls the organs of the body, and thus all of our automatic behaviors from circulating blood, to breathing, to the whole digestion and elimination process and everything in between.

Some of the most common dysfunctions are

  • Difficulty swallowing, leading to choking and pneumonia.
  • Low blood pressure on rising becomes common, leading to dizziness and falls.
  • Sluggish digestion, with inefficient processing of nutrients, leading to a weak immune system and recurring infections.
  • Elimination dysfunctions. Urinary incontinence is common. Constipation is more common than diarrhea.

Treatment includes those useful with all Lewy body disorders with a special focus on:

Drugs

  • Dementia drugs may be of general help
  • Drugs to help low blood pressure on rising.
  • Antibiotics for infections
  • Antacids for digestive and issues
  • Stool softeners for constipation

Alternatives

Sensory Perceptual Dysfunctions (especially visual):

Although one's sight may be perfect, Lewy bodies can cause poor depth perception, poor hand-eye coordination, double vision, illusions and hallucinations.

People usually know their early hallucinations are not real but as the Lewy bodies increase, they won't. Teepa Snow demonstrates how to respond to a person's hallucinations:

Treatment includes those useful with all Lewy body disorders with a special focus on:

Drugs:

  • Behavior management and anxiety drugs should be used very carefully if at all, due to a Lewy body related sensitivity to this type of drug
  • Go here to see which drugs to use or avoid

Alternatives:

Lesley Tart provides some simple tips on how to use engagement skills to handle some challenging behaviors.

The LBDtools Learning Center
Non Drug Options
The Disorders
Resources and Links
The Dementia's
Being a Responsive Care Partner

A Special Caregiver's LBDtools.com Offer!

This is a $62.85 Value for a special price of $49.99
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"The Caregivers Guide to Lewy Body Dementia"  by Award Winning Authors Jim and Helen Whitworth is the first book to present a thorough picture of what Lewy body dementia really is.

"Managing Cognitive Issues in Parkinson's & Lewy Body Dementia" explores the history that Parkinson's, Mild Cognitive Impairment, Alzheimer's and other neurological disorders share with Lewy body.

This trio pack is rounded out by The Whitworth's training guide,"Riding a Rollercoaster With Lewy Body Dementia." "Rollercoaster" is a comprehensive manual for all caregivers working with Lewy body dementia patients. 

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