Lewy Body, the Other Dementia

Helen Buell Whitworth and James Whitworth, authors of a: “Caregiver’s Guide to Lewy Body Dementia” and “Managing Cognitive Issues: in Parkinson’s and Other Lewy Body Disorders,” share this passage with us about Lewy Body dementia. Learn more from their story.Lewy Body, the Other Dementia

Lewy Body, the Other 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 “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.

Understanding Lewy Body Dementia

Over ten years have passed since Annie died in 2003, but LBD still isn’t well known. However, there is a lot more to know now than there was then.

We know that:

  1. A person with LBD loses the ability to think and perform previously well-know 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 AD 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. A great cook, she lost the ability to know when to take a cooking pot off the stove. But, she knew Jim and her daughters on her deathbed.
  2. Behavior issues can be among the first symptoms with LBD, in contrast to among the last with Alzheimer’s. This includes delusions (believing something that isn’t really true), hallucinations (perceiving something that isn’t really there), being paranoid (unreasonable feeling of being persecuted). The acting-out from these symptoms can be combativeness, as with Annie, or withdrawal, or anything in between. (Of these behavioral symptoms, only early visual hallucinations are hallmark symptoms of LBD. The others do occur, but they also occur often with other diseases.)
  3. 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. This makes non-medical intervention very important.
  4. A person with LBD can lose the ability to talk fairly early in the disorder. 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, for instance, the person striking out against the pain and the caregiver. A caregiver who views acting-out not as irrational behavior, but as a mean of communication, can often identify the source of discomfort and fix it. This is why non-medical intervention, like learning how to communicate with your loved one is important.

You can learn more about the warning signs of Lewy body dementia on our website, or in our new book: “Managing Cognitive Issues in Parkinson’s and Lewy Body Dementia.”

About the AuthorsThe Whitworths

James A. Whitworth (Jim) has been working with Lewy body disorders since the late 1990s when his first wife had undiagnosed Lewy body dementia (LBD). She suffered the consequences of a general lack of knowledge so common at that time. Since then, Jim has made it his mission to spread LBD awareness. Helen Buell Whitworth has been writing since she was a teenager, but it was not until after she retired from nursing that she began to write in earnest. When she met and married Jim, his passion motivated her to write about Lewy body disorders. She says that she had never heard of the disorder until then even though she was a nurse and had been caregiver to a sister with Parkinson’s. The two work well together. Helen’s medical knowledge supplements his enthusiasm and his detail orientation provides balance for her creative skills. The couple live together in Mesa, Arizona. In the summers they travel and talk about LBD, mostly in the Pacific Northwest. The Whitworths are also the authors of the award winning book, “A Caregiver’s Guide to Lewy Body Dementia.”

Please leave your thoughts and comments

  • Diana Normandia

    My father is 82 and has Parkinson disease and dementia. I have done research and everything points to Lewey bodies dementia yet his Dr just says dementia. I am his caregiver and I just want to be prepared for the next phase. Where can I find a support group. I live in Queens NY. Thank you

    • Pam Smith

      It is well established that Lewy Body Dementia and Parkinson’s Disease go hand-in-hand. Some believe they are the same disorder — if dementia presents first then its called Lewy Body; if motor symptoms appear first then its called Parkinson’s.
      For a support group, try asking your local government “Agency on Aging” for listings, or asking your doctor for a referral. Best of luck. Glad you are reaching out for help as a caregiver. We’re the most under-served group in America.
      P.S. Get another doctor. Look for a neurologist with a specialty in movement disorders and Parkinson’s. An unqualified neurologist will take your business, but not be very helpful. We’ve already had that problem with my Dad’s Parkinson’s Disease treatment. His primary care referred him to the wrong neurologist.

      • Virginia Velleca

        Not all movement disorder doctors will or can discuss this aspect. Try to find one who also concentrates on this important part of PD as well as the movement disorder side and find a support group that seeks education as an important part of the group activities. Many state PD associations have annula of even monthly program to advise and discuss important points of the disease, some relate to the symptoms you or the person you are careing for, sometimes, not, or a symptom that may appear in the future, or one you had dealt with. It is reassuring to remember that no 2 PD patients have the same form of the disease.

  • Virginia Velleca

    My husband died June 3, 2015, he had Parkinson’s Disease and what I believe was Lewy Body dementia. He knew me when he wasn’t delusional, knew our children all but one time, but hadn’t been able to add or subtract for at least 10 years, this man who had been a scientist all of his life & career. He would try to help me paint walls and paint the floor instead, over & over things like this happened. His hallucinations were extreme and even in his rational periods he believed the things he had seen while hallucinating.

    This is the FIRST article I have read that described his symptoms so closely. Many articles were helpful and I was able to determine it was Lewy Bodies, through those and talks with friend whose husbans were diagnosed with Lewy Bodies. His Neurologist didn’t believe it was Lewy Bodies because it didn’t come on suddenly and he lived with it for such a long time, he was diagnosed with PD in 2000, first symptoms in 1995. He may have had it several decades earlier, on occasion he displayed some symptoms that in retrospect, looked a lot like some of his later symptoms, i.e. delusions and hallucinations. Is that possible?

    I am very grateful to you for writing this, it has been a huge help. I wish I had read it much sooner. It might have helped people who were helping me take care of him to understand the difference between what he had and Alzheimers.

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