Recently Ken Spears, who was the co-creator of the cartoon series Scooby Do died of a disease called Lewy Body Dementia. It’s the same disease that Robin Williams had before he took his life. Many people are unaware of the symptoms, which can sometimes be dramatic so I wanted to bring you awareness of it in case you know someone who may have it.
Living with the disease
Jo Anne Jordan’s husband of 49 years, Ed, was diagnosed with Lewy Body Dementia several years ago. It caused him to have a sleep disorder and while he was dreaming he sometimes got violent. This was against his nature as he was a pastor.
At church, he started having memory problems that he and his family thought may have been caused by stress. However, after he retired, his cognitive abilities got worse.
He began hallucinating and thought he saw insects, mice, and even large objects that weren’t there. Jo Anne had read a book about dementia and decided to take him to a neurologist. The first doctor they saw wasn’t helpful at all, so they found one who was able to diagnose the problem and help them to manage it.
Ed is now in his 70s and is doing well physically. His balance is a little off, but he can do more tasks than he could before like mow the lawn and take out the garbage. Lewy Body Dementia causes visual and spatial challenges so he can’t drive anymore.
Coping with caregiving
Jo Anne has found support with LBD Caring Spouses. She also reached out to the LBDA Association and Facebook groups for caregivers of patients with that particular form of the disease.
It’s not curable but with medication can be held off for 2-20 years depending on how it has progressed when diagnosed.
As a caregiver for her husband, Jo Anne gets tired but has 2 adult children who help her out occasionally. It was harder during the COVID pandemic because she didn’t want to bring others into the house to help unnecessarily.
Spreading awareness of Lewy Body Dementia
Jo Anne learned about a seminar in Philadelphia that was seeking couples who were dealing with the disease. She and Ed attended and participated in a panel discussion. The seminar inspired her to help raise awareness about the hallucinations and delusions that impact all forms of dementia.
Lewy Body Dementia is the 2nd most common form of degenerative dementia in the elderly next to Alzheimer’s disease.
Symptoms include:
- Visual hallucinations
- Movement disorders
- Poor regulation of body functions
- Cognitive problems
- Sleep difficulties
- Fluctuating attention
- Depression
- Apathy
Currently, there is no treatment specifically for LBDA. There are medications developed for Alzheimer’s and Parkinson’s Disease that some people are prescribed to manage select cognitive and movement symptoms. There are also no FDA approved treatments for hallucinations and delusions with any form of dementia, although one is being evaluated by the U.S. Food and Drug Administration.
You can read more about treatment options here.
Do you know anyone who has Lewy Body Dementia or suspect they do? Please comment below.
A disease I’d never even heard of! Scary. And fascinating. Now I’ll be aware!
Thanks, Diane. Always good to know.
What a heartbreaking disease… I’m glad there is some help.
They are working on it, Carol. There is still a lot to learn.
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