Good Days & Bad Days with Lewy Body Dementia–Fluctuating Dementia

One of the key differences between Lewy Body Dementia (LBD) and Alzheimer’s is that one day the person can be “almost normal” and the next “completely out of it.” It’s a fluctuating dementia. Actually, it can even change by the hour.

Fluctuating Cognition

For example, with my dad, some days we could have really good detailed conversations about traveling, current events, sports, etc. Other days he had a hard time expressing a clear thought. Sometimes he was slow putting words together in a sentence but other times I don’t think he understood the concept of what we were talking about, particularly related to finances, directions, health insurance, etc. The topic of health insurance is complicated for most people but on good days he could completely explain what the Medicare “do-nut” hole is but other days he didn’t know how insurance worked. My dad had a degree in Electrical Engineering and an MBA so these were topics he knew well just a few years earlier.

Fluctuating Sleeping Patterns

Lewy Body Dementia is also marked by fluctuating sleep patterns and tremors during sleep. My dad was a guy who could operate at a high level on a normal 8 hours of sleep until LBD.  With LBD he was so exhausted he could easily sleep for hours and hours during the day, wake up for a while but then go to bed right after dinner only to wake up to wander around the house at 3:00 a.m. On top of that, he didn’t always know how to get back to his room. (My Mom and Dad slept in separate rooms because of my Dad’s tremors and wandering.) One time he left the house in the middle of the night to go for a walk! My mom complained about how much he slept and left to his own devices he would sleep too much. When he stopped making sense in a conversation or would zone out while we were visiting, we knew it was time for a 30-minute cat nap, which was sometimes enough to bring him back to a good cognitive state.

Fluctuating Behavior

Someone with Lewy Body Dementia also suffers from fluctuations in behavior. This can include depression, aggression, delusions and inappropriate behavior in public. Dad went from being extremely easy going, happy person to someone very anxious about time related events, like starting to get ready for a doctor’s appointment hours before he had to leave for the appointment. He was often irritated at people for small things like not having dinner ready on time. And a constant undertone of depression, which we could hardly blame him for feeling. Fortunately, he did not suffer from many delusions, which can be a serious problem for many people with LBD. This fluctuation in behavior is what many friends of Robin Williams remembered in his last months before his death.

Maybe these fluctuating symptoms are part of the reason doctors misdiagnose LBD so often. Many times when my dad went to the doctor, they happened to be “good days” and it was hard for him to communicate fully what happened during bad days. The more people realize that fluctuating patterns are key in the disease, the more LBD will be considered as a possible diagnosis.

Please Contribute to the Lewy Body Dementia Organization Through Our Walk

As we walk the 500-mile Camino de Santiago, we will be handing out information and talking to fellow walkers about Lewy Body Dementia to help create awareness. Most people with the disease are misdiagnosed and not medicated appropriately to slow the progression. All donations go directly to the Lewy Body Dementia Organization for education and research. You can DONATE HERE–Crowdrise–Walk with Lewy!

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