A note to all those friends and family members who think our loved ones are “just fine.”
“My friend came to see my dad and he greeted her and talked pretty good. The next time she came (he) had no idea she was even there and way out if it. It was refreshing to have her see what I see daily with the fluctuations in attentiveness. She finally gets what I try to explain to my friends.”
Whenever someone says “dementia” the vast majority of those not dealing with the situation automatically assume you’re referring to Alzheimer’s. They have no idea there are several different types of dementia with Alzheimer’s only being one of them. While some might not think that’s an important issue, for those dealing with Lewy Body Dementia, it’s a never ending source of frustration.
Lewy Body Dementia is not like Alzheimer’s.
There are some things in common, of course. According to Medical Dictionary “Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness.”
Both Alzheimer’s and Lewy Body Dementia share those characteristics, but LBD has many added components not typically present in Alzheimer’s. It’s been said that LBD is like having Alzheimer’s, Parkinson’s, and Schizophrenia all at the same time. Memory and confusion, movement issues, and behavioral problems are all typical with LBD, but one of the most unique features deals with something known as “Fluctuating Cognition.”
Unlike Alzheimer’s patients who exhibit a continual decline (every time you see them, they’re worse than the time before), those with Lewy Body will have periods of apparent improvement interspersed with periods of rapid decline.
No one knows exactly why this happens, but one prevailing theory has to do with the way the disease attacks the brain. The theory states that as certain areas of the brain die, the brain temporarily re-routes the nerve responses to allow for a connection around the non-functioning area. This is often seen with stroke patients who (with physical therapy and time) often regain the use of a limb originally paralyzed by the stroke by training a different area of the brain to take over the duties of the damaged spot. However, unlike stroke victims who do not have continual damage, Lewy Body Dementia causes an ongoing destruction of brain tissue. Eventually, there are fewer and fewer pathways for the nerve impulses to use. These temporary pathways allow those with LBD to have periods of improvement that may last days, weeks, or even months, but as the disease marches forward, the periods of improvement become fewer and last for shorter periods of time.
Another fluctuation of ability that frustrates caregivers is something commonly referred to as “Showtime.” Showtime is a relatively short period (a few hours or a day or so) that occurs when their loved one has company, visits friends, or goes to the doctor etc.
They do not do this intentionally.
They do not think, “Ah, company is coming. I’d better be on my best behavior.” They have no control over when or why their thoughts and behaviors suddenly improve. One theory is that during those times, the innate desire to impress company simply kicks in. Unfortunately, Showtime takes a lot out of our loved ones. It’s not unusual for those with LBD to crash once they’re no longer surrounded by visitors, often sleeping for hours and slipping into an almost catatonic state that may last days.
“It’s very difficult to explain this to friends and family …as some still don’t quite see that there are any problems/issues with my Mom.”
This is frustrating for caregivers as the visitors tend to think their LO isn’t as bad as the caregiver claims. Family members will question the need for placement in facilities or will accuse the caregiver of exaggerating. Many friends and family will even blame the medications, suggesting our loved ones are simply “over medicated” and if the medications were removed, they’d be “just fine.”
Unfortunately, doctors often don’t witness the extent of the problems either. Our loved ones will often smile and answer questions with more clarity than they’ve had for months during that 10 minute appointment, making it difficult for the doctor to assess the progression accurately. Or as one caregiver put it:
“So often when we go to the doctor or a specialist, when asked how she is, she smilingly and beguilingly replies ‘fine.’ She can engage in conversation with vocabulary that otherwise eludes her, and diminishes the severity of the situation in the eyes of the clinician so frequently. The real problem, of course, is that the end the result is inaccurate assessment and, thus, ineffective treatment — or none at all.”
This situation is one of the reasons it’s imperative for the caregiver to keep notes and point out specific examples of issues typically shown by their loved ones when not in Showtime mode.
A sad component of fluctuating cognition unique to LBD is that often during these brief periods of clarity, our loved ones realize how much they’ve lost, resulting in deep sadness and depression. They may cry uncontrollably making caregivers wonder if the temporary improvement is a blessing or a curse.
If you have a friend or family member suffering from Lewy Body Dementia, and you are not the caregiver, please understand that your visits are only allowing you see a small sliver of the day to day issues. When the caregiver tells you stories of behavior that doesn’t fit with what you’ve witnessed, remember you’re seeing them at their best, not their worst.
Or as one caregiver said, “…they only observed a small window of Lewy reality.”
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