Most people are familiar with Alzheimer’s disease, but have you heard of Lewy body dementia? This lesser-known type of dementia is commonly characterized by movement symptoms, changes in behavior and judgement, and sleep disorders.

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Understanding Lewy body dementia

When Jim Whitworth’s wife, Annie, was diagnosed with Alzheimer’s in 1999, he went to the internet and compared her symptoms to those that went with the disease. They didn’t fit, but something called Lewy Body disease did.

When Jim tried to talk to her doctor about this, the doctor just shrugged and dismissed Jim’s concern with, “I’ve never heard of that.” Because the medical community didn’t know about Lewy body dementia (LBD), as it is now called, Annie received drugs that we now know can make LBD much worse. Jim believes that these decreased both her quality and length of life.

Not knowing how to deal with this bewildering disorder as a caregiver also caused them problems. He didn’t know why she acted out or how to calm her down. What might have worked with Alzheimer’s disease (AD) just didn’t work with Annie.

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Facts about Lewy body dementia

Decades have passed since Annie died in 2003, but LBD still isn’t well known. However, there is a lot more information available now than there was then. Consider the facts below.

A person with LBD loses the ability to think and perform previously well-known tasks first, unlike a person with Alzheimer’s, who tends to lose memory skills first. This means that Annie lost the ability to reason well before a person with Alzheimer’s might. She also couldn’t figure out that her hallucinations weren’t real, or that Jim wasn’t the one causing her pain or discomfort. Annie was a great cook before she developed LBD, but she lost the ability to know when to take a pot off the stove. However, she still recognized Jim and her daughters on her deathbed.
Behavior issues can be among the first symptoms of LBD, which usually occur later in the progression of Alzheimer’s. This includes delusions (believing something that isn’t really true), hallucinations (perceiving something that isn’t really there), and being paranoid (unreasonable feelings of being persecuted). These symptoms can result in combativeness, as with Annie, withdrawal, or anything in between. (Of these behavioral symptoms, only early visual hallucinations are hallmark symptoms of LBD. Others do occur, but they also occur often with other diseases.)
Drug sensitivity (reacting to a normal dose of a drug as though it were an overdose) occurs at least 50% of the time with LBD. Caregivers would say that was a very low estimate. Most caregivers can tell you of at least one drug that their loved one has reacted poorly to. The drugs that a person with LBD is most likely to be sensitive to are the very drugs most used to deal with behavior issues in seniors with dementia. This makes nonmedical intervention very important.
A person with LBD can lose the ability to talk fairly early on in the disease. Then as their ability to think also deteriorates, they can’t communicate, or sometimes, even identify pain or discomfort. They just know they are uncomfortable and want you to fix it. This can result in aggressive behaviors. A caregiver who views acting out not as irrational behavior, but as a means of communication, can often identify the source of discomfort and fix it. This is why nonmedical interventions, like learning how to read your loved one’s body language and other nonverbal cues, is crucial.

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Lewy Body, the Other Dementia

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Understanding Lewy body dementia

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Facts about Lewy body dementia

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