I wanted to post a reminder that I’ve created this blog to give more extensive details on practical and “in-the-moment” information that we caregivers can use to ensure the best and most loving care of our loved ones suffering with Alzheimer’s Disease and dementias.
I am working on several posts that you’ll be able to read shortly, but I would like to encourage and invite everyone to like the Going Gentle Into That Good Night Facebook page and join the Facebook Caregivers – Alzheimer’s Disease, Dementia, and Other Age-Related Illnesses group where I am continually posting links and short comments about research and relevant blog posts that we can all use as we go through the caregiving journey.
If you have not yet read my book, Going Gentle Into That Good Night, please be sure to get your copy. It is an overview – and the genesis of this blog – of my own caregiving journey with my mom and I offer lessons I learned in the form of resources and advice you won’t find anywhere else in the Alzheimer’s Disease and dementia literature.
And, as always, if you find any of the information that I provide here or on Facebook useful and helpful, and are so inclined, a small donation (click on Donate on the left side of your screen) would be greatly appreciated. This mission to write, share, and provide helpful information, advice, and encouragement is, it seems, my life’s work now. It is a labor of love because I know firsthand what each of you is going through, but I still have to pay the bills.
Thank you in advance for reading, for sharing, and for allowing me to share my journey with you.
This post by Kay Bransford, on her Dealing With Dementia blog, is important enough that I want to share it here for all of us who are – or may be in the future – caregivers for loved ones with Alzheimer’s Disease and Dementias.
We live in a digital age and we work very hard to protect ourselves online from things like identity theft and access to our financial and personal data. However, it is important to make sure that we give access to our POA’s in case something happens to us and it is important that we have this information for our loved ones with Alzheimer’s Disease and dementia whom we are caring for and, if not already, will be entrusted to handle their legal, medical, and financial affairs for them.
So, Kay’s advice struck me today as being very timely for all of us.
I watched Life and Death in Assisted Living on PBS’s Frontline program earlier this week, and I highly recommend this for all family members with parents with dementia and Alzheimer’s Disease in assisted living facilities with “memory care” units or who are considering placing their loved ones in this kind of facility.
Let me say at the outset that they’re not all awful. However, let me also say that they will never take care of our loved ones as well as we can and would. I understand that some people, because of distance or a myriad of other reasons, believe they have no other option. If that’s the case, it is our responsibility to be (or designate a family member who is there to be) all over that facility and our loved ones 24/7.
Sadly, the mistreatment, the mistakes, the lack of care shown in this series are more likely to occur. Again, I’m not trying to make generalizations here, but I’ve seen some of this firsthand with people whose family members were absent most of the time or couldn’t be bothered even when serious matters arise.
These elderly people tend to get treated differently – worse – by some staff members when family and loved ones are not involved. My first-hand observation of this – and my Mom’s when she was an ombudsman at a facility in northeast Tennessee after my dad’s death – made me (and my mom) want to lower the hammer, rescue the elders, and shake some sense, compassion, and love into their families and loved ones.
We have a responsibility to our parents and our elderly folks to ensure that they have the best care possible as they end life. We cannot do that if we’re not involved day in and day out, even if we can’t care for them at home, with assisted living or nursing home care.
The more we are present – and I mean every day, different times of the day, for chunks of time each day – the less likely our loved ones and parents will suffer the mistakes, negligence, and deaths because of lack of care or failure to do the job that this series talks about.
Mom was in an assisted living facility with a memory care unit until I knew she was as stabilized mentally as she could be. It was not the first choice she and I had made, but the first choice turned out to be a “let’s-get-you-in-bind, put-the-screws-to-you, then-make-you-hand-every-bit-of-cash-you-(or-your-children)-have-over-to-us-up-front.”
And that’s not uncommon, based on what I’ve found in my research since then. I can’t think of too many times in my life when I’ve been angrier than I was when this materialized, but I discovered that this company was fairly representative of how assisted living and nursing home facilities, especially those that offer memory care, work.
As appalled as I was to discover this, I was even more appalled to discover that this is business as usual for most of these places.
Fortunately, the place that I found for Mom wasn’t like this, but it had its own unique set of issues. The reality is that nobody else is ever going to, or in fact can, care for our parents and loved ones the way we will and are able to.
The bottom line for us is whether we’re willing (and able, because some people are not) to make the sacrifice to do for our parents and our loved ones what they were willing to do for us when we were babies, helpless, and completely dependent on them.
For the last several weeks she was her assisted living facility, I was living there because she’d fallen and had a bad ankle sprain and I needed to be there. Within a short time,we made the decision that she would move back in with me and we’d be together at home until the end.
And I’m grateful we had that time together, although I know at times it was hard for my mom and at times it was hard for me. In the end, that didn’t matter, because I knew…and Mom knew…that we were both doing the best we could and there was unconditional love and care behind that.
Poignant post from a daughter who’s mom is suffering from dementia/Azheimer’s Disease: http://mydementedmom.com/2013/07/30/dont-stop-asking-about-my-mom/
I identified with this post in a way that I can’t really put into words, but I know two things specifically echoed my own experiences.
One was how our loved ones seem to become invisible as they lose their ability to recognize, communicate, and respond in tangible ways with most people. Touch, as the author points out, is huge. Hugs, kisses, putting my arms around her shoulders, and holding her hands a lot were how my mom and I stayed connected, more so after the dementias and Alzheimer’s Disease, than before.
And the other is one that has long been a principle for me. Quantity (of life) doesn’t matter if there is no quality. It’s why I’ve had a no-extraordinatry-measures living will and DNR since I was in my early 20’s and why Mama did the same for herself after Daddy died.
Medicine can give us time, but it will never be able to give you the intangibles of “good,” “healthy,” “sound,” or “well.”
And, without those, time is useless.
Today’s post will discuss the psychotic manifestations of the brain damage that occurs in dementias and Alzheimer’s Disease. These, in my opinion, are the ones that are the hardest for us, as loving caregivers, to understand, anticipate, and manage.
I think part of the reason delusions, suspicions, and fears resulting from dementias and Alzheimer’s Disease are so difficult to be on the receiving end of is because they often can be sudden, random, and transitory, so they have the effect of keeping us, as family, friends, and caregivers constantly off-balance.
And that’s not comfortable for anyone as a constant state-of-being, since a sort of everpresent anticipatory anxiety is a common side effect for those of us on the receiving end.
For several months in 2010, as my mom was experiencing these in full-throttle, it seemed like my heart was constantly about ready to beat out of my chest as we went through this together. Sometimes it was because I didn’t know what I was walking into and other times it was because of what I’d just experienced. But it was nonstop for the duration.
One of my mom’s biggest fears after my dad died was that I would die before she did and she’d be left, in her mind, alone. Although I constantly reassured her that she didn’t need to worry, there were times in 2010 when I thought her fears might just come true.
Before we identify some of characteristics of the common psychoses associated with dementias and Alzheimer’s Disease, it’s important to understand what they are.
Delusions and hallucinations are not the same thing. Hallucinations are part of the visuoperception disorders that were discussed in “‘I See Dead People’ – Vision, Perception, and Hallucinations in Alzheimer’s Disease and Dementias.”
Delusions, on the other hand, are persistent untrue beliefs not substantiated by facts or evidence. In our loved ones suffering from dementias and Alzheimer’s disease, these delusions often are accompanied by paranoia. And, frustratingly, there is no amount of logic, evidence, persuasion, or proof that is effective to counteract the delusions.
It’s important to note, though, that the influence of delusions waxes and wanes with our loved ones, and sometimes may not be present at all. I found with Mom that hers were worsening and more pervasive as her sleep patterns got more and more disrupted.
The most common negative (not all delusions are negative) delusions among our loved ones suffering from Alzheimer’s Disease and dementias are:
These delusions actually create the other two psychoses of malignant suspicions and irrational fears.
Mom exhibited all of these before medication (SeroquelXR was a life-saver for her and me until the tardive dyskinetic effects related to her Lewy Body dementia prevented her from being able to take it anymore), and the belief that people were stealing things from her was the first to emerge.
It’s interesting to note that some delusions have a factual foundation in our loved ones’ pre-dementia and pre-Alzheimer’s Disease lives.
Mom actually had experienced theft of money (an insurance policy her dad had left to pay for her college was stolen by the aunt who was her guardian after his death) and a chest of items he and her mother had left to her (by the same person).
So, even before the dementias and Alzheimer’s Disease started taking their toll on her brain, Mom had a heightened fear of people stealing from her and taking advantage of her.
So when she began moving things – and this moving things got more frenetic as the damage from these diseases increased, so it just exacerbated everything and was a losing battle for me to try to keep up with – and then forgetting where she moved them, she immediately started accusing people of stealing them.
At first, her accusations were against other people, but eventually, she became convinced that I was the thief of everything, including her money (which I had no access to) and everything she misplaced.
I will never forget a Sunday afternoon a few weeks before her psychiatric hospitalization when my sister called to tell me Mom said she’d been at the hospital all the night before. I knew it wasn’t true, but my sister urged me to go back for a third time that day to Mom’s apartment and check on her.
I pulled into the parking lot next to a police car that was running and my gut told me that Mom had called 911 and the police were there because of her. Someone met me at the entrance and said that she’d called the police to have them arrest me for stealing her money.
Fortunately, the policeman just sat and talked with Mom and realized what was going on and got her calmed down and by the time I saw her, she was out of the delusional episode and tearfully welcomed me and said she loved me and asked me to forgive her.
Her tears always broke my heart and there was nothing to forgive, because I knew it wasn’t her fault, but my reaction was more a sense of helplessness to do anything about what was happening to her brain and the realization that it was bigger than both of us.
(Fields of Gold: A Love Story and Going Gentle Into That Good Night are two books I’ve written that detail different aspects of the details of how this unfolded.
Fields of Gold: A Love Story is the history of my dad and mom [much of what explains my mom’s background that led to her behavior and thinking as vascular dementia, Lewy Body dementia, and Alzheimer’s Disease affected her brain] and us, me included, as kids and our lives together. It is a story of love, of commitment, and of endurance. For all of us. I recommend it because I chronicle so much of the last years of Mom’s life, and for all caregivers, this will resonate, but more importantly, hopefully it will help you.
Going Gentle Into That Good Night is the big-picture overview of caregiving for loved ones who are suffering from Alzheimer’s Disease and dementias and my general offering of the lessons I learned in the process with Mom. This blog is a direct result of that book, so I can fill in the specifics, the details, and hopefully encourage and help you.)
After that Sunday, though, the delusions took over and every day until her hospitalization was like a siege. There were moments – and even a morning after a week of pure hell that I’ll never forget – of love and lucidity, but they were few and far between.
She was convinced I was stealing from her, that I hated her, and that I was purposefully hiding things in her apartment so she couldn’t find them.
Some days I spent hours trying to find things – sometimes successfully and sometimes not – and give her proof that nothing was missing and that I loved her.
But Mom simply, because of the dementias and the Alzheimer’s Disease and the ravaging effects that they were having on her brain, was unable to be persuaded that what she believed wasn’t true.
The one thing that always stung me most, however, was when I’d tell her that I loved her and she’d angrily say “Don’t tell me that! You don’t love me! It’s not true!”
And although she seemed to be doing everything she could – again, she wasn’t aware of nor was she responsible for this – to push me away or to push my buttons so that my behavior would validate her delusions, all I could see was the scared little girl who had been left all alone at the age of six and, instead of being angry or quitting her, compassion and mercy took over and all I wanted to do was protect her and love her and make it all okay.
And here is where I’ll offer some advice from my experience with delusions, suspicions, and fears. I’m not saying I always handled it with grace, but that was always my intent, and, most of the time, I did okay.
The first thing is to not take it personally. The reality is that delusions are the product of damage to the brain and mixed up memories of a lifetime and, as hurtful as the accusations and the strong negative reactions can be, they’re not really about us in the present.
The second thing is to remain calm. Reacting emotionally to or arguing with our loved ones suffering from delusions, suspicions, and fears actually heightens the suspicions and fears and in a strange way validates, for them, that their delusions are true.
It’s hard to stay calm, but it’s absolutely essential that you do. An even, reassuring tone of voice, deliberate and smooth movements and gestures, and supportive and encouraging words will not stop or change the delusions, suspicions and fears, but they will help.
If the situation escalates because of your presence, leave.
But not without being sure to tell our loved ones that we love them and we’ll see them later. I don’t care what kind of reaction that elicits – because it usually is negative – but it lets our loved ones know we’re not abandoning them.
And, then come back later, and start over. Repeat as often as is necessary.
The most important things, in my opinion, that we can do is to be loving, be patient, be merciful, and be compassionate. You and I have no idea of the tumultuous mental landscape that our loved ones with dementias and Alzheimer’s Disease are living with.
It’s beyond comprehension.
There’s a sense, for our loved ones, of the knowledge that they’re “going crazy,” and yet doing anything about that is beyond their control. It’s sad, it’s scary, it’s depressing, and it’s lonely.
Love, patience, mercy and compassion given and expressed unconditionally and continually will not change the reality of what these diseases are taking from our loved ones, but they will be the greatest gifts that we are able to give and will ensure that our loved ones can count on us to be there and give them these things, no matter what else happens, as they and we walk this journey together to its natural conclusion.
Today’s post will discuss visual and perceptual problems that are common in our loved ones suffering from dementias and Alzheimer’s Disease. These problems fall into three main categories: vision, perception, and hallucinations.
Vision problems occur as part of the normal aging process. However, because the brain plays such an important role in how and what we see, the aggregate damage from dementias and Alzheimer’s Disease exacerbates and disproportionately magnifies the normal age-related vision problems that older people develop.
Two common age-related vision problems are cataracts (clouding of the lens inside the eye that decreases vision) and macular degeneration.
The macula is located behind the eye in the center of the retina. Although the macula makes up just 1/20 of the entire retina, it is responsible for the sharp, clear, and undistorted detail of central vision, which enables us to read, recognize faces, drive a car, and watch television.
There are two types of macular degeneration. “Dry” macular degeneration is how age-related macular degeneration starts and drusen (German for “small dots”) begin to form in the retina around the macula. It is important to note that the presence of drusen does not necessarily mean that macular degeneration will eventually occur, nor does it mean future vision loss.
However, if drusen continue to form, then dry macular degeneration will occur. The good news is that the progression of this form of macular degeneration is very slow and noticeable visual impairments usually do not occur for several years. However, when they do occur, the same field of vision problems that sufferers of wet macular degeneration experience will be present.
“Wet” macular degeneration, on the other hand, is more serious and can result in immediate and severe vision loss. Wet macular degeneration occurs when blood vessels burst in the retina and fluid and blood leaks result in cell death.
While there is no treatment to reverse – although vitamin supplementation may help slow the progress – dry macular degeneration, there are very effective treatments to stop the fluid and blood leaks and prevent damage to the eye at retinal eye centers for wet macular degeneration. This is a serious vision condition that needs to be treated immediately.
This sequence of pictures and graphs (showing the distortion of central vision) shows what the progression of wet macular degeneration does to vision:
I bring these up because my mom had dry macular degeneration in one eye (her stronger eye) and wet macular degeneration, which we treated aggressively up until her death, in the other eye (her weaker eye) before she was diagnosed with vascular dementia, Lewy Body dementia, and Alzheimer’s Disease.
And I know, with the damage to other parts of her brain from the dementias and Alzheimer’s Disease, the visual distortions caused by these common age-related vision problems were exaggerated.
It’s important to know this is not uncommon with our loved ones suffering from dementias and Alzheimer’s Disease, and is part of what makes the whole process a losing battle from the get-go.
One of the most noticeable visual distortions associated with dementias and Alzheimer’s Disease is characterized by sudden stops at door thresholds and on walking surfaces where there are delineated changes in color and consistency, such as going from a wood or tiled floor onto carpeted floor.
These are known as “visual cliffs,” and, interestingly, the same phenomenon is observed in infants as they begin to crawl. What causes these abrupt stops are abnormal depth perception and a fear of falling.
The ability to accurately perceive depth seems to erode in proportion with the increased damage to the brain caused by dementias and Alzheimer’s Disease.
An unexpected benefit of this, however, is that caregivers can use this visual distortion to help control wandering by putting “cliffs” (a two-inch piece of black tape) at the bottom of and on the thresholds of exterior doors. This is typically pretty effective.
Other common vision distortions include:
If we, as loving caregivers, can better understand the what and the why of the visuoperceptive difficulties inherent in dementias and Alzheimer’s Disease, then we are better equipped to adapt our loved ones’ environments to make those environments as comfortable, as non-threatening, and as “safe” as possible. We’ll never be able to completely eliminate the effects because the diseases are bigger than our best efforts.
Some of the causes of visuoperceptive difficulties in our loved ones with dementias and Alzheimer’s Disease include:
Dementias and Alzheimer’s Disease also bring difficulties with orientation. Evidence of this includes:
The cumulative effect of the visuoperceptual changes brought on by dementias and Alzheimer’s Disease will result in:
Visuoperceptual difficulties also lead to problems moving around. These problems make our loved ones fearful of falling and, as a result, they tend to dramatically slow down their movements while they try to walk safely.
As loving caregivers, we should learn to anticipate these situations, help explain what is being encountered, offer our arms for support, offer encouragement and slow down our own movements to match those of our loved ones.
Specific difficulties that our loved ones with dementias and Alzheimer’s Disease have when moving around include:
As caregivers, we can help minimize some of the effects of visuoperceptive difficulties for our loved ones suffering from dementias and Alzheimer’s Disease in several ways.
The first way is to ensure that our loved ones get regular eye health checkups and that any age-related vision problems that can be treated are treated immediately and aggressively.
A deliberate use of colors can help with diminished contrast vision. For example, a green plate on a white tablecloth is much easier to see than a white plate on a white tablecloth. Additionally, changing from a standard white toilet seat to a colored toilet seat will make the toilet seat easier to see.
We can also use color to highlight important objects and orientation points (for example, the bathroom door).
Improving the lighting levels in our homes will also help our loved ones, and ensuring that lighting is even around the house will minimize shadows and “dark areas,” making navigation and perception easier.
Use solid colors instead of patterns in flooring, carpeting, and runners to give a safer environment for navigating the house.
If mirrors and shiny surfaces cause problems with illusions and misperceptions, then remove those that are practical to remove and cover the rest.
Be sure to close curtains or blinds at night.
How we respond to our loved ones with visuoperceptual difficulties is perhaps the most critical part, in my opinion, of showing our love for them.
I have always had a very tender and gentle side, but I never showed or saw much of it myself until I took over the responsibility from my dad of taking care of Mama and making sure she was comfortable, safe, protected and okay.
Our responses should be calm and loving always. And this can be challenging, especially when we’re tired or aggravated. I am stating an ideal that I didn’t always attain with Mama. But it’s our goal to do this.
When our loved ones don’t recognize an object or person, we should not draw attention to the mistake nor ask questions that would put our loved ones “on the spot.”
We can explain what the object is used for or who the person is, but if it doesn’t work, let it go. It’s far more important to listen to what our loved ones are saying – and encouraging them to converse and participate in activities – than it is for us to be right.
When our loved ones don’t recognize people, we can ask friends and relatives to introduce themselves to our loved ones. Not recognizing people can be very distressing for our loved ones, and it can be upsetting for the people who are no longer recognized.
However, in the end, our job is to make sure our loved ones feel safe, encouraged, and supported. This is not their fault, so criticism or trying to force them to do something they are mentally incapable of doing is cruel and will often make our loved ones retreat from interaction with us and others. That does no one any good.
Hallucinations also fall into the vision category because our loved ones often see people who are not there or people who have died as if they are alive and in the room with them. Mama saw Daddy regularly, even though when she started seeing him, he’d already been dead for ten years.
She also saw friends and family from her earlier years from time to time.
And she saw people going in and out of her apartment (usually a young boy and girl, who’d go in when she left, and leave just as she came back in) just before her psychiatric hospitalization and the subsequent diagnoses of mid-to-late-stage vascular dementia and Alzheimer’s Disease in 2010.
Most of the time, she told me about these “visits” after the fact, but two hallucinations happened with me there when she was living with me. And they floored me, but instead of insisting there was no one there, I let her talk about them, which gave me time to formulate honest answers to her questions about them without hurting her or dismissing her.
The first happened just after she’d awoken one morning and I was sitting on the bed with her holding her hand while she woke up. I was speechless when she pointed to the bookcase just to the left of the bed and she asked me, “Do you see those two angels over there?” I told her I didn’t, but I encouraged her to tell me what she was seeing. She wasn’t scared and she seemed to be happy “they” were there.
As soon as Mama was fully awake, they were gone.
The second one was much different. We got up in the middle of the night because she needed to go to the bathroom (I kept the bathroom door fully open and a light on at night, and since it was just the two of us, I seldom closed the door). Just after she got in the bathroom with my help, she said, “Close the door! I don’t want that man to see me!”
I closed the door with both of us in there. When we were done, I opened the door to help her back to bed and she asked me if the man had gone upstairs. I nodded. She relaxed and went back to bed and back to sleep.
When she awoke the next morning, she didn’t say anything about the man right away. But when we were eating breakfast, she asked me where the man and the children – there were no kids the night before – were. I suspected she was thinking of Daddy and us as kids, so I told her everyone was gone and just the two of us were there at home.
That ended it, but it didn’t end the hallucinations that I continued to hear about right up until her death.
I was initially very conflicted about how to respond to Mama about the hallucinations because I knew they weren’t real and I believed I would be dishonest if I gave any indication that I thought they were.
However, I realized the hallucinations were real to her, even if I knew they weren’t really happening, so I encouraged her to talk about them in a way that didn’t lead her to ask me questions because I wasn’t sure how to answer them.
And I found that to be the best approach. She wasn’t afraid, she didn’t shut down, and she didn’t feel threatened by my response. And I heard some pretty interesting stories in the process. It was win-win.
My next post will tackle some of the psychoses that our loved ones suffer with dementias and Alzheimer’s Disease. While not all of these are negative – I will give some specific examples – many of them are and they, in my opinion, are one of the toughest aspects of these diseases to deal with rationally, lovingly, and calmly.
But it can be done and I will pass on some tips and lessons I learned in the process in the hope that it will help you.
I’ve created the Caregivers – Alzheimer’s Disease, Dementia, and Other Age-Related Illnesses Facebook group. The group offers practical and informative support for caregivers of loved ones suffering from Alzheimer’s Disease, dementia, and other age-related illnesses. Please feel free to ask questions and seek support and we will be happy to help. If we don’t know the answer, we will do our best to find resources to help you.
It’s an open group, so anyone can join. Please consider joining and spreading the word so others know this resource is available.
You are not alone.
I recently watched The Iron Lady, the 2011 movie in which Meryl Streep portrayed Margaret Thatcher, the late Prime Minister of Great Britain. I think everyone ought to see this movie, not so much for the historical content, but to experience from the inside what our loved ones with dementias and Alzheimer’s Disease experience.
According to Mrs. Thatcher’s daughter, Carol, her battle with dementia and/or Alzheimer’s disease became noticeable in 2000 and The Iron Lady focuses on the years after the death of her husband, Dennis, in 2003.
I cannot adequately express how much insight and understanding experiencing this – and I literally felt like I was experiencing it – gave me into what Mom went through.
I also cannot begin to convey the deeper empathy, 
sympathy, and protectiveness that I experienced as well. There were many moments when I wished I could take both Mrs. Thatcher and Mom into my arms and just hold them tight and not let go.
This movie touched my heart on its deepest levels and my tears and my helplessness welled up deep within me. And, yet, it looked like – and explained – a lot of what I saw, from the outside, with Mom.
I remember the first time Mom told me that Daddy, who’d been dead for ten years, had visited her the night before and that he’d left right before I got there. Mrs. Thatcher spent a lot of time with Dennis, as the dementia/Alzheimer’s Disease progressed, after his death as well.
There is a frenetic and frenzied scene in which, in an attempt to banish Dennis for good, Mrs. Thatcher packs everything of his up in a few short hours, including a suitcase for him. He takes the suitcase and leaves for good while she is begging him not to leave just yet. It’s a very poignant scene.
One of the brilliant aspects of this movie is that it captures the mental confusion and chaos of dementias and Alzheimer’s Disease. We experience it right along with Mrs. Thatcher. And it made sense to me because it explained a lot of what I had seen with Mom. Interestingly, it didn’t bother me nor did it seem weird to me. It looked a lot like what I already knew.
But the difference was that I was finally able to walk in Mom’s shoes and know how she experienced it. That made me love her even more – if that’s possible – and it made me wish I’d known then what I know now. But maybe I can take what I learned and, as always, pay it forward.
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.
Going Gentle Into That Good Night 