Does a dementia patient with sundowning have it for the duration?

I don't have an answer, rather a statement. I have been diagnosed with mild dementia earlier this year. My sweet Moma, and 6 of my Aunts and Uncles had Alzheimer's so I knew that I would get it at some point in my life but not at 61 years young. I'm 62 now. My statement is, lately I've noticed that I'm just not sleeping good at all at night. My Husband and I stay on the same schedule and have for 20+ years due to his job. I'm on Donezapine (generic for Aricept so I'm not sure how to spell it) for my dementia but my Husband and daughter say they can't really tell any difference. I've been on it since April of this year. I get a lot of support from my Husband, but not from my daughter. I don't think it's really hit my Brother yet. He's 4 years older than I am. My Husband told me that I don't have to worry about going into a Nursing Home because the only place I'm going to die is in his arms. We've been married for a little over 35 years and he's my Heart. God comes first and my Husband is second. I'm just wondering about the sundowning and when it starts. For my Moma, it was the last month of her sweet life. I was Blessed to be able to take care of her the last 2 years of her life. I moved in with her and took care of her. It was so hard to see her go through all of the changes, but sundowning didn't come until the last month. I've read and heard different things so I guess it's up to the person. I'm on 30mg of Morphine 2X daily for my back. I've had 6 surgeries on it and although the pain isn't as bad as it use to be, I'm still in a lot of pain. I'm on 600mg of Gabapentin at bedtime, 500mg of Zonisamide for Seizures, 0.5mg Clonazepam, and 7.5 Oxycodone. All of these are at bedtime. The Morphine, Oxycodone and Clonazepam I take twice a day--12 hours apart. I use to sleep like a baby until about a week or so ago. At first I wasn't taking any naps during the day but now I have to because I'm so tired. If I don't get the proper rest I'll start having seizures again and I don't want to do that. I was having the Gran-Mal Seizures and I started having those in my 40's. I just wanted to tell you some about me so you might understand me better. Have a Blessed life.

Yes they do. However, medication can help with some of the symptoms. You need to consult with the doctor/nurse. It can also be a matter of trial and error with the medications. One that works well for one individual may not work for another. It depends on where in the brain the dementia is causing the issue. Just like with mental illness, some medications work for some people and some don't. It worked well for my mother in law once we found the right combination and times to give it. She quit wondering in the middle of the night with assistance with sleeping pills and xanex. Try not to think of this as "drugging" someone up. It is not good for the patient not to have sleep. Sleep is the restorative for the body and brain. With dementia, they sometimes need assistance to be able to sleep, or not obsess on things or to calm them. This is what they need at this stage of the disease.

Had not thought of melatonin for my mother in law. She gets up 4 times /night. Thank you all! Worth a try for her! It seems like the body gets used to many of the medications mentioned above and they become less effective. Recently had to ask doctor to put my MIL back on citalopram (celexa) as she was becoming combatative. Seems to be helping so far. The sundowning is such a strange phenonmenom. Some days worse than others.... some days earlier than others. Fatigue makes it worse...... and usually begins as it becomes darker in her house. We try putting on extra lights.....until bedtime start to turn some off. Also urinary tract infections( UTI's )are a huge cause of increased confusion in elderly patients. They can cause hallucinations so would ask doctor to rule them out before starting some of the powerful antipsychotic meds.

Hi everyone, I am curious about using the Melatonin. I did give some to my husband but I thought it might have connected to a vivid dream he had that night and came banging on the bedroom door saying someone phoned and animals were loose in the house! I thought perhaps I better not give it again. Did anyone else see this kind of reaction or do you think it was unrelated to the melatonin. I do prefer to do things naturally when possible :)

I've been caring for my Grandma for 2 years. She has vascular dementia, when we had her on Risperdal she was hallucinating and was convinced I was poisoning her. We switched and had her on Buspirone. With that med she ended up having a psychotic episode and was in hospital on observation for 3 days where she punched a nurse. I was being hit, kicked, bitten, and verbally attacked DAILY. Worse during her sun-downing times which would start at 3:30 almost on the dot, daily, and go far beyond her being in bed. Her gerontologist was practically useless. And so I, as always, began doing some hard research and came to the conclusion I believed she also had Lewy Bodies w/dementia. I took her to a mental health expert (psychologist specializing in dementia) and she came to the same conclusion. We took her off the Buspirone and put her on Seroquel. I saw a change literally in 48 hours! She has been on that med for almost 8 months now and I would call it a lifesaver at this point. I have only been slapped once or twice, and she has what we call "mini meltdowns" rarely now, and usually while she's getting ready for bed. Her "tantrums" used to last up to 6 hours and now they tend to max at 15 minutes. Our house is now filled more with laughter than screaming and cursing! :)

My opinion: Don't let your doctor just keep medicating. Do your research. If one med doesn't seem to be working, consider trying a different one. I learned that people with Lewy's tend to be highly sensitive to certain anti-psychotic meds and they can actually make their condition worse rather than calming them. That's what happened with my Grandma. You are their biggest advocate! I had to make doctors listen to me when they didn't want to. But I can be pretty pushy sometimes ;)

Also, at night, she takes Melatonin along with her other meds. And, since she's been on the Seroquel she usually will sleep through the night, where before, she was waking up, sometimes, up to 6 times a night!

my husband is on Ativan one hour before bedtime, he sleeps through the night

Mom gets her xanax and lortab for back pain just before bed. Without this she will not sleep through the night. She has a hospital bed so she can find a comfortable position for her heart failure. Ativan is just as good, not harmful in any way.

Try not letting her sleep in the daytime. Also you don't have to use a drug to get sleepiness. Try exercise. I just attended a conference for dementia with the AZ collaboration of 7 organizations who are the leaders in research. Most neurologists there stated exercise was perhaps best for coping with symptoms since no drug will slow the progression of dementia. And no, the sundowning symptom will start to change once she goes into another stage of the disease progression. Melatonin (pill) or apple cider vinegar + honey (1 tblsp each) works great too.

Is sundowning the second stage of Alzheimer's disease or the third stage of AZ? Just wondering if anyone knows.

My Dad started sundowning a couple years ago, and it would get worse in the fall. The Dr. suggested melatonin, and I have to say it has worked wonders. I get the liquid form, and give him 3mg mixed with juice about an hour before bed. He still gets a little confused in the late afternoon etc, but once he goes to bed he sleeps through the night.

I have been a Care Giver to my mother the past 3 years. This past year she has told me that she wakes up throughout the night and she can't sleep. My mother has always been a person who has many things on her mind. She seems to experience depression and anxiety levels more quickly. Even though she may be going through the 2nd stage of dementia, she can still think pretty well and take care of herself. I have learned to be very cautious about what a Dr. may say, do, or prescribe for my mother. I have been studying and wondering what kind of a medication could help my mother. I just reviewed "Wikipedia - Ativan and Risperdal. Please note these 2 meds might be helping some of your parents, however, this is a very "deadly" drug and horrible side effects have been reported and medical companies have been sued. I understand that meds work differently for each person, however, please be very careful what med(s) you give to your elderly parent(s). Thank you for providing the names of these 2 drugs so that I could do my research.

In my husbands case, seroquel did not help at all. Risperidone helped a little, but made him lethargic all day. His behavior is similar to virtualhorizon's dad's. My husband can spend three to four hours telling me to leave the house thinking I am a stranger. Finally, the doctor prescribed alprazolam (xanax) as needed. I give him half the dosage about 1/2 hour before going to sleep and he has not gotten up in the middle of the night (turning on lights going outside) for several weeks. When he doesn't recognize me, I can now talk him into going to sleep.

it is usually the beginning of Alz setting in....and medicating til they fall on their snoot isnt helpful either...my experience is a mix of both risperdal and ativan....both in minute does...at bedtime and an extra risperdal at 3 when he pop fires up the confused part of the day when he thinks im mom and my kid is me.
hug

wjjlyj -- I certainly hope not! My Dad has been experiencing sundowning for about the past year. It starts around supper time and continues until my Mom gets him to bed at around 10:15. He wanders in circles around the house, always fixated on something that she can't do anything about -- "people" who live in the house and are up to no good, his fingers falling off (yes, he believes his fingers are falling off), worries about another house he hasn't owned for 16 years. He wanders so much that he actually works up a sweat. Sometimes he tries to hold up the walls or doors because "they're falling down". It's very sad. Sometimes after he goes to bed he gets up and starts roaming, turning on the lights, etc. His neurologist upped his dosage of Seroquel to two pills at night (100 mg I think). That didn't do any good and my Mom swears it made things worse, so she went back to the one pill at night. We have an appointment with the Dr. in about a month and will be asking him if its possible to get a medication change. The meds apparently stop working to a large degree after about 18 months or so. Perhaps you need to ask your neurologist about a med change, also. I have read that sundowning is just one phase of Alzheimer's and that it will eventually stop. Hang in there... Please let us know what happens.