Lewy Body Dementia Fluctuations - Why???

Lewy Body Dementia is still an enigma to the majority of those who are experiencing it, either through a loved one or personally.  It makes very little sense insofar as it begins rather meekly and then is finally present enough for a diagnosis.  Once diagnosed there is very little hope, in that between 60-80% of neurons have been decimated by the disease (this from a discussion on the LBDA forums pages, so where this information came from, I’ve no idea, but thought it interesting enough to share  Symptoms | Lewy Body Dementia Association).    

As we’ve seen with Mom, there are good days and bad days.  There are times when she seems rather cogent and others in which she is like a newborn babe, sleeping at every turn.  In some ways, I like to think of this as the Benjamin Button effect after the movie about the man who began life as an old man and then aged in reverse.   The underlying question, though, is what causes these fluctuations on a day-to-day basis?   We’ve no idea how we’ll find Mom, whether she’ll be sleeping or in a state of alertness; if she’ll be able to walk and eat, or if she’ll be far too weak to accomplish much that we take for granted.  

According to the LBDA webpage, (Symptoms | Lewy Body Dementia Association), the symptoms may fluctuate hour-by-hour, as well.  And nobody's quite sure what the reason is.  There is speculation that while there is neuron death the brain works hard to re-route the circuitry to make itself work as normally as it can - this would explain the bouts of sleepiness and then the surges of energy we’ve experienced in the past few months.  

This seems to be the great question with LBD that none can answer at this time.  Interestingly, though, they are finding the fluctuations also occur within other forms of dementia, as well, including Alzheimer’s, but whether or not it’s to the same extent as with LBD is unclear.  But, at this point in time, so little is actually known about LBD that researchers are still attempting to decypher the disease and its components that, perhaps, more will be understood in 10-20 years, as it happened with AD.  Who knows?  

So, as we ride this coaster we will try to keep our eyes and ears open for any clues that might help.  Sometimes answers can be right under our noses, but we are looking too intensely to spot them.

Further Information:

Lewy Body Dementias (UCSF Memory)

DLB  (Alzheimer’s Society of North Carolina)

Lewy Body Dementia: Information for Patients, Families, and …  (National Institutes on Aging and Health)

Dementia with Lewy Bodies  (Caregiver.org)

Lewy Body Dementia  (HelpGuide.org)

Diffuse Lewy Body Disease  (Parkinson’s Society Canada)

Lewy Body Dementia  (Lewy Body Society)

Dementia with Lewy Bodies (DLB)  (Johns Hopkins Medicine)