Lewy Body.


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I recently had a resident’s husband come up to me and ask about moving his wife to another room.

“I think Bethany* should be in her own room, not sharing one,” he said.

“Why’s that?” I asked. “Is she not getting along with her roommate?”

“No, it’s not that…it’s just that, well, she’s seeing things. She says that she keeps seeing people in the room and it bothers her,” he explained. 

I knew that she had Dementia with Lewy Bodies. “I’m sorry to say this, but it doesn’t matter what room your wife is in,” I said. “She’s going to be hallucinating no matter where she lives.”

Lewy Body has gotten a lot of attention lately. That’s because the late, great Robin Williams had apparently been diagnosed with Parkinson’s before he decided to take his own life. What does that have to do with Lewy Body? Lewy Body Diseases include Parkinson’s Disease without dementia, Parkinson’s Disease Dementia, and Dementia with Lewy Bodies. Essentially, you can have Parkinson’s without dementia, but if you have Dementia with Lewy Bodies, you’ll probably have some Parkinsonism. I’ve heard that Robin Williams was coping with some dementia symptoms. 

To keep it simple, there are a few things that make Lewy Body Dementias different from Alzheimer’s and Frontotemporal Dementia, and these are:

  • Fluctuating levels of impairment
  • Parkinsonism 
  • Visual hallucinations 
  • Possible sleep disorders
  • Possible repeated falls and syncope 

The thing that makes Lewy Body Dementias extra challenging are the visual hallucinations. The best thing that you can do to help someone with DLB? “See” what he or she is seeing. The worst thing you can do? Tell your loved one that the things she’s seeing aren’t actually there. Embrace her reality: if she’s seeing people in her room, tell those people to get out! If she thinks that dogs are living in her bathroom, put down some dog food for them. If she believes that snakes are biting her toes while she’s sleeping, buy some snake repellent. Get creative. It’s your job to go with the flow and help your loved one cope with hallucinations that may come from DLB. 

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of two published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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