In 2015, a significant amount of research was dedicated to better understanding what I believe is the least understood of the major types of dementia. That type of dementia is Lewy Body dementia.
This post will will begin to summarize the findings of this latest research in way that is both accessible and will hopefully better educate us as caregivers of loved ones with Lewy Body dementia. Continue reading →
I think this research could give some good insights into this particular facet of Lewy Body dementia, which always fascinated me and intrigued me to watch and listen to when Mama was experiencing it.
The last movie Natalie Wood made before her death in 1981 was a forgettable movie, despite a high-profile cast that included Christopher Walken (who has the creepy eyes of a villain, no matter what character he’s playing) and Louise Fletcher, called Brainstorm.
The movie is about a bunch of scientists who are trying to develop a device that will record everything happening in someone’s brain so that someone else can fully experience the same thing right down to the emotions and physical sensations (much like the virtual reality simulators we have today).
Louise Fletcher’s character is wearing the device when she experiences a fatal heart attack and all her brain activity is recorded.
After her death, Christopher Walken’s character uses the device to walk through Fletcher’s last minutes on earth, but almost dies in the process because he experiences the sensation of a fatal heart attack just like she did. The scientists decide the device is too dangerous and the project is scrapped.
While the movie was awful, the subject was fascinating because neurology is still so incomprehensible for the most part and unlocking all its secrets are, in my opinion, truly beyond the grasp of humans.
So any time we’re able to get just a sliver of a glimpse into how the brain works, it’s another piece of the puzzle, which we’ll never finish, that we can put into place.
There are some facts from the Huffington Post article about dreams that I found interesting, and may be a slightly-ajar door into understanding R.E.M. behavior disorder.
Our bodies react to dreams the same way they would if we were awake and experiencing those things and we dream in real time.
R.E.M. behavior disorder shows us that because we hear it and see it external in speech and motion and there’s a general sense of what’s going on the dream just by what our loved ones are saying and doing.
And as someone who dreams vividly most of the time, I can also attest that this is true.
If I’m falling in my dreams/nightmares (a little more on nightmares later), I literally feel the sensation of falling, which is what jolts me awake. All the fear in the dreams/nightmares is evidenced by my greatly-accelerated heart rate, profuse perspiration, and a long exhalation of breath that I began to hold just before I woke up.
The same thing happens when I’m running (these are my two default nightmares) away from something that’s either dangerous or chasing me. I jolt awake. My legs are tired, I am struggling to catch my breath, and I turn on a light to make sure nothing and nobody is there that I need to run from. All that happens in perhaps a second.
But the next fact about dreams that is fascinating comes into play here. I can’t go back to sleep because I am literally replaying the dreams/nightmares – I do this with other dreams, especially the ones that have meshed people and places and things that don’t belong together in them – too when I wake up and I can see them and go through them awake to try make sense of them or figure out why I dreamed them – almost frame-by-frame.
And there is a cadre of dreams and nightmares I’ve had over my lifetime that I recall just as vividly and in detail right now – I see them in my mind’s eye, if you will – as when I first had them, some of which go all the way back into early childhood.
Research has found that people who can recall their dreams regularly have a higher level of spontaneous activity, both in sleep and in wakefulness, in the medial prefrontal cortex and the temporoparietal junction of the brain than those who seldom remember their dreams.
The temporoparietal junction of the brain is a key player in processing both information from within the body as well as external information, while the medial prefrontal cortex is responsible, in part, for cognition (strategy, decision, actions) in environments where uncertainty (awake or asleep) exists.
Alzheimer’s Disease research shows a greatly-reduced metabolism rate in the temporoparietal junction in general and it appears that all types of dementia affect the medial prefrontal cortex.
One of the primary areas where medial prefrontal cortex research has been done is in PTSD and there is strong evidence to suggest that PTSD is the result of neurological changes within the medial prefrontal cortex.
It would, therefore, probably not be surprising to see a higher incidence of dementias and Alzheimer’s Disease eventually occur within people who have been diagnosed with PTSD.
My thinking, though, of the higher activity in the temporoparietal junction and medial prefrontal cortex in those of us who usually can recall our dreams, is that it’s actually hypersensitivity of both of these parts of the brain, because research also shows a high sensitivity to sounds when “high recallers” are awake.
I am definitely much more sensitive to sounds, both in frequency, pitch, and patterns, than most people, to the point that they really bother me or I can’t be around them very long because they literally hurt (I can’t exactly explain that in tangible terms, but I experience an almost-unbearable intense sensation of both auditory and neurological pain).
Sudden sounds, whether they’re loud or not, make me jump. Extended exposure to high-volume sounds makes me physically uncomfortable. And a lot of sounds occurring simultaneously overwhelms me.
The impact of this particular research for our loved ones suffering from Lewy Body dementia and R.E.M. behavior disorder, because they do not remember their dreams at all, could lead to a closer look at the medial prefrontal cortex and temporoparietal junction regions of the brain and the role that Lewy Body proteins play in how they function.
A third fact in the Huffington Post article that I found intriguing is that nightmares aren’t always about fear, but other underlying emotions like failure, worry, sadness, or guilt. My guess is that we morph all those other emotions into whatever foundational emotion underlies all of them.
I believe that underlying emotion is the primary emotion we’re most familiar with, understand the best, and either know how to escape (in my case, running) or know it is what will finally do us in (in my case, falling off something high enough that it will kill me, usually the road or bridge that turns into a high-wire I realize I’m on over the middle of the stormy waves of an ocean with no way to get to either end safely and I look down, lose my balance, and start falling).
The last fact I’ll discuss about dreams surprised me because I’ve never heard anyone say this out loud, although I’ve experienced it. You can die in your dreams and live to tell about it.
I never died in my dreams, always waking up before inevitable death, until I was in my late 20’s.
I clearly remember my first dying dream and the sensation of knowing I was dying and then actually, in what seemed like slow motion, going through the process of dying.
How I died was not the way I would ever die in real life, but what I remember most was that once I realized I was dying, it wasn’t scary. In fact, it was, although what killed me was extremely violent, peaceful and easy, with the last sensation I had being one of relief.
I’ve died on a regular basis in my dreams since then, but the most striking similarities among these dying dreams are that they aren’t scary and there is a profound sense of relief before it all just fades to black.
I suspect because death has been on the doorstep of my life – not me personally, but with my dad first and then my mom – since my late 20’s, the dying dreams are my way of coping with that.
I also suspect that because they haven’t been traumatic experiences for me, they equipped me to better handle the dying processes of both my parents.
And they’ll continue to equip me to handle well the inevitable conclusion to my own life whenever and however it comes.
After all, dreams are just another part of the incredible, albeit mostly out of the reach of humans, complex neurological system of reasoning, thinking, understanding, and responding that our Creator endowed us with.
Today’s post will discuss how dementias and Alzheimer’s Disease affect circadian rhythms and sleep, as well as some tips to help manage sleep disruptions effectively.
There are a lot of factors that make up our sleep behavior. I first want to discuss the biology of sleep and how, even if there are no other sleep disorders, dementias and Alzheimer’s Disease disrupt the biological sleep cycle.
Humans have an internal 24-hour clock that is synchronized with daytime and nighttime (light has a profound impact on this clock). This clock is referred to as our circadian rhythm.
As people age, this clock changes so that they normally tend to go to sleep earlier and wake up earlier. Sleep disorders like insomnia and sleep apnea are more common in older people as well. But their circadian rhythms are still primarily based on light (the more light, the more wakefulness; the less light, the more sleepiness) and time of day.
However, in our loved ones suffering from dementias and Alzheimer’s Disease, circadian rhythms go out the window because the diseases impair the brain’s ability to tell time and to distinguish between light and dark as indicators of when to sleep and when to awaken. It is sometimes helpful, in the early stages, to get a 24-hour clock to help our loved ones distinguish between A.M. hours and P.M. hours, but eventually that will be a casualty of the diseases.
The most common circadian rhythm disorder associated with dementias and Alzheimer’s Disease is a phenomenon known as “sundowning.” It occurs in the late afternoon and early evening.
It is characterized by speech and behavior repetition, constant pacing , excessive restlessness, wandering, disorientation to time and place, and agitation or aggression towards others.
Wandering is especially dangerous because if our loved ones get outside, they can walk long distances with limited vision because of the sun going down, sometimes on crowded roadways, and are susceptible to being the victims of crime and vehicular death.
One probable cause of sundowning is that there is damage to the part of the brain that produces melatonin (the sleep hormone) and the reduced production causes an irregular sleep-wake rhythm.
Another theory on the cause of sundowning is related to the energy levels of our loved ones with dementias and Alzheimer’s Disease . At the end of the day they are likely tired from the day’s activities.
This can aggravate the symptoms of the diseases, making them more anxious and stressed. Before the onset of these diseases, this time of day would have typically been the busiest for them. They would be getting home from work, getting ready for dinner, doing household chores, and going to bed. Now that they’re unable to do those things, they have little to do at a time that was the busiest of the day for them.
The most common sleep disorder that occurs with dementias and Alzheimer’s Disease is an irregular sleep-wake rhythm. You can see in the graph above how disruptive this rhythm is and why our loved ones with dementias and Alzheimer’s can be so tired, in general, all the time.
However, I believe the most damaging effect of this sleep pattern is that it actually prevents the restorative/repair functions that occur during a normal sleep rhythm, which exacerbates the neurological damage that dementias and Alzheimer’s Disease do to the brain. In short, this sleep pattern makes the diseases worse.
The most effective – and safe – way to try to minimize an irregular sleep-wake rhythm is to add melatonin to nighttime medications. As I’ve said before, up to 12 mg of melatonin is considered safe, but start with a low dose (3 mg or 5 mg) and give it time to see if that gives our loved ones more continuous and restful sleep. The goal is to keep them asleep at night and keep them awake during the day. Too much melatonin can have them sleeping all the time.
I would also suggest keeping our loved ones active and busy – as they are able – during the day (I will talk more about this in another post, but will briefly touch on it here). Up until the last week and a half of my mom’s life, when she’d had the major heart attack and just couldn’t do much with me, I had her help me with the household chores that she could like making the bed, folding laundry, preparing meals, and helping me with the dishes.
I didn’t care whether it was perfect or not (initially a big challenge to my normal OCD about those kinds of things), but I found that the more she did, the better she felt and the better she slept.
There is a sleep disorder that is specific to Lewy Body dementia and is one of the primary symptoms of that form of dementia. It is called R.E.M. sleep behavior disorder.
R.E.M. sleep behavior disorder is impossible to miss. Anytime a sufferer is asleep, they are in motion acting out their dreams and, at least in my mom’s case, having sometimes understandable and sometimes not in-depth conversations. It is also characterized by “picking” at clothing or bedclothes while asleep.
On the one hand, at least for me, it was quite fascinating to watch Mom dream and act out her dreams. Apparently – and I’ve seen this with other Lewy Body dementia sufferers, so it must be common for all of us to dream about – she dreamed quite often about food, because she’d often make the motion of either eating with a utensil or with her hands to her mouth. That was usually when she was napping during the day.
Most of her conversations occurred at night, although occasionally she’d say a line or two during a daytime nap. And they’d last all night sometimes.
Her nightime dreams also included a lot of moving around and possibly a version of restless legs syndrome (not uncommon for R.E.M. sleep behavior disorder).
While I know this had a detrimental effect on her quality of sleep, it was disruptive for me too. I have always been a light sleeper and have had my own issues all my life with not sleeping much (and sometimes not sleeping at all for a day or two) and not getting quality sleep (waking up a lot or being wide awake in the early morning hours and not being able to go back to sleep for an hour or two). With Mom talking and moving around all night, it made sleep that much more difficult for me.
An increase in melatonin helped with this as well. I bumped her up to 7 mg each night (she was at 5 mg before) and it was just enough to keep most of the symptoms at bay. There were still some nights when it was noticeable, but the worst of the symptoms seemed to be alleviated. And because she slept better, she felt better and did better during the daytime.
I hope this brief overview helps. If you have any questions or any topics you would like to see discussed here, leave me a comment or email me at goinggentleintothatgoodnight.com. If I don’t know the answer, I’ll do my best to try to find it.
You’re not alone and my intent and goal is to keep reminding you of that and help you as much as I am able.