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My Dad has what I expect is terrible "sundowning". It begins usually around 5 PM (just after his supper) and can extend to beyond bedtime. He wanders through the house and becomes very confused. He begins to obsess about certain things -- last night he wanted to know where his ID card was and was it safe; he was on his hands and knees on the floor, searching for a "communications wire" along the floorboards; he saw an arrow on the floor and wanted to know what it was for; he lost something and couldn't find it because "everything is the same color". The evening began with my Mom getting him on the bed to rest a little. Next thing she knew he had all his clothes off and was messing around by the front door. She got him dressed again and he began wandering and talking about things she couldn't understand. I've read a lot of articles about sundowning, but they all seem to say the same thing -- patient gets restless and confused, and this is what needs to be done to minimize it. But the articles never seem to have real-life examples of what's going on and what the "sundowner" is actually doing! The next morning Dad seldom remembers what he did the night before. Any others have a "sundowner" and examples of their behavior?

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Hi freqflyer,

The members of the Alzheimer's and Dementia Support Group have provided some really helpful advice on sundowning over the years. We recently combed through the forum and collected a number of these different tips and ideas from members and put them into an article to make them easier to find. I hope you and other members find it helpful!

How to Cope with Sundowning: Tips from Family Caregivers
https://www.agingcare.com/articles/How-to-Cope-with-Sundowning-Tips-from-Family-Caregivers-200000.htm

Best of luck to you all!
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Glad I found this thread as my Dad [94] is just starting the sundowning. What I found interesting is that I had been reading up on this subject prior to Dad getting it, but reading it and experiencing it is so different.

Seeing my Dad like this is so hard for me to understand has he was always a brilliant person [a mix of Leonard and Sheldon, for those who are familiar with the TV show Big Bang Theory]. And Dad even knows that something is wrong with his brain in the evening hours. Methink I will set up an appointment with Dad's primary doctor and see what can we do next, meds or not. I want Dad to be comfortable in his later years.
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Is sundowning indicative of a particular stage in dementia?
My wife is young for a dementia sufferer of 10 years, she is 62 now and she has many other medical problems. Her sundowning lasts all day
Our family have been preparing for the end for some time now and will not be a shock, but I would like some views on my original question
Thanks
d
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Time to up dosage on mom's Seroquel! I've been putting it off for about six week. Tonight has been HELL for the past almost 5 hours now. Went to bed easy enough, but up and down, doesn't have any idea where she is, last time she got up I waited about 5 minutes before I went to check on her. She will usually get back to bed on her own, not tonight! Found her at the kitchen table, looking at mail to try to figure out where she is. She was wondering where everybody else is, meaning my sisters as little girls. For the first time she could not remember either of their names. It is just so bizarre, it is not usually this bad! Should get her checked for a UTI again as well, heeding my own advice!
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I will make again an anedoctal report without scientific base , about some food supplements that are giving great results to control some dementia symptons of my aunt that have advanced dementia.
That supplements in a empiric way ,are helping to control sundowning , delusions, hallucinations , agressiviness, etc, making very calm , easier to cope, etc.

The food supplements (nutraceutical supplements) that we are giving to her are (we open the capsules with each supplement and put in her juice or milk):

CARNOSINE : it is a peroxinitrite scavenger, antiglycating supplement, mild heavy metal chelator, and it natural source is in chicken breast.There are dozens of scientific articles about carnosine use in dementias.
We gives very small doses of 50 mg (fifty miligrams) at breakfast at lunch and at dinner. (Only under permission of the physician of the patient).

ACETYL L CARNITINE - There are dozens of scientific articles about it use in dementias , as a mitochondrial function enhancer, a peroxinitrite scavenger, an alternative fuel to the brain, with synergistic effects with extra virgin coconut oil toincrease neuron energy, enhancing speech, attention, cognition, mood, strengh, etc, in small doses of 50 (fifty) mmiligrams at meals , together with carnosine (acetyl L carnitine in small doses have synergistic effects with small doses of carnosine and with very small doses of extra virgin coconut oil).

We gives too small doses of extra virgin coconut oil (a TEA spoon 1 to 3 times a day.)
We associate to very small doses of the joint supplement called glucosamin sulphate (for example two hundred miligrams at meals three times a day).

With that food supplements above , we are seeing the control of dementia symptons (including sundowning), with the empirical use of the supplements above, but only under the PERMISSION of the PHYSICIAN of the patient.
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I will make again an anedoctal report without scientific base , about some food supplements that are giving great results to control some dementia symptons of my aunt that have advanced dementia.
That supplements in a empiric way ,are helping to control sundowning , delusions, hallucinations , agressiviness, etc, making very calm , easier to cope, etc.

The food supplements (nutraceutical supplements) that we are giving to her are (we open the capsules with each supplement and put in her juice or milk):

CARNOSINE : it is a peroxinitrite scavenger, antiglycating supplement, mild heavy metal chelator, and it natural source is in chicken breast.There are dozens of scientific articles about carnosine use in dementias.
We gives very small doses of 50 mg (fifty miligrams) at breakfast at lunch and at dinner. (Only under permission of the physician of the patient).

ACETYL L CARNITINE - There are dozens of scientific articles about it use in dementias , as a mitochondrial function enhancer, a peroxinitrite scavenger, an alternative fuel to the brain, with synergistic effects with extra virgin coconut oil toincrease neuron energy, enhancing speech, attention, cognition, mood, strengh, etc, in small doses of 50 (fifty) mmiligrams at meals , together with carnosine (acetyl L carnitine in small doses have synergistic effects with small doses of carnosine and with very small doses of extra virgin coconut oil).

We gives too small doses of extra virgin coconut oil (a TEA spoon 1 to 3 times a day.)
We associate to very small doses of the joint supplement called glucosamin sulphate (for example two hundred miligrams at meals three times a day).

With that food supplements above , we are seeing the control of dementia symptons (including sundowning), with the empirical use of the supplements above, but only under the PERMISSION of the PHYSICIAN of the patient.
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Oh yes. Mom came down w/a UTI and it went straight to her head! She was up at 2am and it lasted for about 36 hrs. She was saying/doing all the kooky stuff, talking about events, people and places long gone. It was so annoying b/c she wouldn't sit still or lie down for more than 15 mins and was totally disassociated from reality. By daybreak, she had settled down. That following night, she slept 12 hours and woke up not remembering any of it. (Lucky her, right?) Since then, I make sure she's up during daylight hours, eating enough and then to bed at dark. As long as she gets enough sleep, all is well. Sure, she still get's up around 2a but will walk to the kitchen and back to bed so I let her do it, listening the whole time. Hope this helps. I cannot imagine facing this again. If so, she's going to AL. Sending hugsfor better days, RachelA
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Barb - I have a couple of ideas for you about the unwanted purchases:

1) ask your TV program provider how to block the shopping channels on your system. When your husband asks you about it, play dumb. Say, there must be something temporarily wrong with the cable and that you'll check it out. Of course, there's nothing to check out but you can pretend and eventually he'll just forget about it. He must be pretty advanced in his forgetfulness to forget the package is he orders.

2) if that fails, give him a credit card that doesn't work. When he tries to order, they will not accept it as payment. He doesn't sound like you would be able to figure out those things himself so he would like to come to you to "fix" the problem. You say you will look right into it, but of course you don't, and you delay and distract with other things until he forgets about it that time.

Returning are refusing packages is not going to reverse the shipping charges which will ultimately cost you a lot of money in the long run. Better to solve this problem by beginning to use "theraputic lying" (you can google this) as a tool in your arsenal to make your daily living easier.
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Thanks everyone for your answers. Dad was diagnosed 4 years ago so the sundowning is nothing new. It has just gotten worse and more frequent over the past 6 months or so. He has been on Seroquel for at least a year and a half at 50mg in the morning and 50mg at bedtime. At one point earlier this year we raised the night time dosage to 2 pills but that seemed to make him worse so we stopped. The Seroquel dosage he's currently on has seemed to work less and less over the past year, though. Several months ago we tried Zyprexa, replacing the night time Seroquel with that in a small dosage. He became a zombie, wet the bed, didn't know what was going on, etc. We stopped it after 4 days but it affected him for another week after that.

moonbeam -- My Dad also has problems re: his house as your Mom does. He sometimes thinks he's in a motel and wants to know when he'll be going home; he continually asks about their former house, sold about 16 years ago, and is concerned as to whether the insurance and taxes are being paid, etc. This type of thing seems to be a recurring one in Alzheimer's patients.

gladimhere -- I totally agree with your comments and we will be speaking with his doctor regarding meds next week. Dad doesn't have an appointment until the end of November, but I called and made an appointment for my Mom and I to talk to the doctor. Its really hard to discuss meds and many of the other things that go with the disease when Dad is sitting there listening and still understanding a lot of it. Even mentioning a med can get him going. It's amazing what he can comprehend without seeming to have the ability to do so anymore! At his last visit with the doctor (neuro) in July we spoke about the sundowning and night time activities. That's when we were prescribed the Zyprexa. His doctor doesn't really want to over-prescribe meds; he doesn't want Dad to be so drugged up that he doesn't know what's going on and sleeps all the time. Mom and I don't want that either. But as you said, the sundowning and constant agitation is very uncomfortable and scary for the patient as well as his caregivers. And the alternative is a care facility. We don't want that, at least until it becomes absolutely necessary. Mom wants Dad to be at home until he passes if possible. So we'll be discussing meds, changes in meds, etc. with the doctor to see if we can make some changes that might work. The doctor has never mentioned giving him the Seroquel at the time your Mom takes it in the late afternoon, and that's one of the things I already have written down to talk to him about. I would think that if that time of day is the worse, heading into the evening, that he could start taking it at that time and perhaps we could try increasing it again. I also want to ask whether we might crush or break up the Zyprexa and give him a minute amount. The entire pill totally knocked him out for the entire night. Perhaps just a small dose in the late afternoon might be possible.

My Mom is 83 and, as I said, wants to keep Dad at home. The physical part of caring for him doesn't bother her. She gets him to the toilet even when he doesn't know what the toilet is, she showers and shaves him, etc. It's the constant sundowning that is wearing on her physical and emotional health. And certainly it would be better for Dad to be at home, even "drugged up" a little more than he is, than to be in a nursing home environment...especially when he still knows what's going on...

I also wonder -- does the sundowning gradually go away? Or does it remain in place until the final stages?

Again, thanks for all your replies. Hope to here more!
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Great question~ Thanks for asking, virtualhorizon! My Mom is not sundowning every evening yet. She went through a phase a few months ago where she would get very tired in the evenings and her memory would deteriorate dramatically. Then I'd get her to bed just to find her up later, pacing and "searching" for unknown lost objects. Often this is when she would accuse me of various bad deeds, which hurt a lot until I realized that the next day, she had no recollection of these episodes. For some unknown reason (God's mercy?) these episodes have diminished and she is mostly in good humor now - sleeping well through the night. I wonder if others loved ones have had episodic bouts of sundowning or if it is something that typically sets in and remains a part of their dementia... Anyway, thanks for asking about this.
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My husband is up much of the night, watching TV or going to the kitchen for snacks. He orders stuff from QVC or other sites and then often forgets what he ordered. There are unopened boxes and stuff unpacked but the parts are mixed up... we don't need or use these things. There is no way, at this time, I can prevent him from using his credit cards.
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So, often we hesitate to give them a drug that will ease symptoms because many of us do not want to induce a stupor or begin an addiction. But, what we need to remember is that the drugs make them more comfortable as well. They do not enjoy the many effects that sundowning can have on themselves either, these are very stressful times of day for them. The variety of drugs that are prescribed, and it may take some testing to determine what will work best, help them relax and calm down. Another side effect is that it makes caregiving easier for you and there is absolutely nothing wrong with that! And never, ever, give caffeine whether it is soft drinks, coffee or tea, that will compound the difficulties. If you want to try a mile approach at first try chamomile tea, but it sounds like a drug is in order, but you never know.

My mom takes 75 mg of Seroquel daily about 4:30, she started with 12.5 mg almost two years ago. The dosage gradually increases, and makes sundowning much easier on her and me. She was constantly checking doors and windows to see if they were locked, seeing people that weren't there, would become angry if something wasn't as she thought it would be. Does it still happen? Yes, but not nearly with the frequency that it had before the drug.

Good luck and do not feel guilty about medicating them, remember they don't like feeling that way, the paranoia and everything else either and it is a huge help to you.
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Yes, that's sundowning and my mother, 95, showed the same symptoms. Her dementia has progressed to the point she was agitated all day, paced around the house trying to open the key-locked outside doors, talked constantly, yelled at me, didn't sleep much and so on.

After 10 years as her caregiver and resisting what I think of as the *strong* drugs, I took her doctor's advice and accepted prescriptions for Seroquel and Aricept.

At first I was alarmed at the idea of putting her on a drug used to treat schizophrenia (the Seroquel), although I realize now that I've seen some of those symptoms in her all my life. The doctor explained this particular medicine is effective for agitation and aggression in the elderly, based on documentation in the field and his own extensive experience.

The purpose of Aricept is to make the patient a bit sharper mentally and the doctor said it could make Mom more cooperative.

His advice proved valuable in Mom’s case. She is calmer, sleeps more (at first, she slept a lot) and I'm seeing her sense of humor more often. She still has the same difficult personality (narcissistic) but now is easier to redirect. The meds have been a big help to both of us, thank God, and just in time for me because I was close to losing it.

The doctor said that as the patient gets used to it, the dosage on Seroquel probably will need to be increased. I can see this is the case and will ask him about giving two of the tiny pills (25 mg) at night because one doesn’t last until morning.

These may not be the right meds for your father, but some trial-and-error could prove helpful to improve the quality of life for both of you. God bless.
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my mother has this problem also. at night when she is tired it is worse. she doesn't think that the house where she has lived for 52 yrs is hers and that she lives in the country which she doesn't. the dr. put her on Namenda but it hasn't helped much yet.
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My father suffered a massive stroke and after any of his hospital stays, it kicked in high gear. very hard to deal with at night, he didn't sleep and was very aggressive. { Foul language, hitting, etc} when I told his doctors about it they did nothing. It did eventually pass, it took months, but it passed. I did not have to deal with him getting up because the stroke paralyzed him , but he constantly argued he could if we would just help...I never wish this condition on anyone.I pray this will be over for you and him soon. And yes talk to the doctors , maybe they WILL help .I believe some of his Meds caused it..Strong antibiotcs.
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Wikipedia has a full description of sundowning along with causes and treatments. You may want to go there online and check it out. Without much doubt, as you describe your dads behavior, he is definitely a sundowner.

Research is leaning in the direction of sundowning being related to circadian rhythm which may be helped with melatonin. While the average dose recommended is between one and three milligrams, many folks report that melatonin doesn't seem to help them.

The Life Extension research group may be coming up with an answer to this as their studies are indicating that higher doses of between 6 and 24 milligrams are required to achieve proper sleeping with some. These studies are on the general population, not dementia patients, and it is unknown at this time whether this applies across the board. Don't increase usage to this level without professional advice.

IMO, another reason that even lower doses of melatonin may not work for many folks is due to the form of melatonin purchased. Pills that are swallowed take quite a while to be processed systemicly, even the ones that are termed "fast dissolving". What should be sought are either liquid drops put directly into the mouth or tablets specifically designated as "sub-lingual". Each of these go into effect virtually immediately through capillary osmosis from the mouth into the bloodstream, completely by passing any digestive delays.
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My father used t have episodes of it. Reaching for things that weren't there. seeing people that weren't in his hospital room. I used to tell him I must have missed it.
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Your story pretty much says it. Is your father on meds? Under doctor's care? Be sure to get in touch with your local Alzheimer Assn.. They can give you loads of information and generic advice.
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