My 89 year old mother has had dementia for 10 years. Three months ago, she started sundowning nightly with aggression during the day and night. I was reluctant to try anti-psychotics - they hadn't worked in the past. Nor had Seroquel which just dried her up. Sleeping pills do not work for the elderly - they have the opposite effect - so I was at my wits end. I saw a study on the use of Melatonin for sleeping, checked for adverse reactions since my mother reacts to everything,found none and decided to give Melatonin a try. The study recommended 6 mg sustained release. I started with 3 mg with no reaction. A few days later, I started on 6 mg and she slept through the night except to go to the commode next to her bed twice without help. There was no dizziness and no adverse reaction. The next two nights, it didn't work. Then it started working again. Now, more than two weeks later, I give her 6 mg melatonin every night and she sleeps through the night. A wonderful and unexpected side benefit is that after the second week, she was no longer belligerent or aggressive during the day and with additional and undisturbed sleep, she is actually pleasant which for us is a miracle. For those who wish to try it, you should know that the sustained release did not work on her and we had to stay with the standard Melatonin. In the study, the sustained release did work on, I believe, 46 of 48 nursing home residents. (I apologize for not having the site of the study for you. I will find and post it.) I guess it is trial and error for all of us. She has been on 8 mg Razadyne since it first came on the market and the sustained release Razadyne did not work either so it may just be the way her system reacts.
Good luck !
Pat

Some sites which might be helpful on the use of melatonin to alleviate sleep disturbance and concomitant cognitive impairment and agitation. Still searching for the primary study.

http://www.ncbi.nlm.nih.gov/pubmed/12019347

http://www.ncbi.nlm.nih.gov/pubmed/10989165

http://www.nel.edu/19_3/2orig1_Brusco_Cardinali.htm

http://www.nia.nih.gov/Alzheimers/Resources/SearchHealthLiterature/fullrec.aspx?id=07935

Pat


http://en.wikipedia.org/wiki/Melatonin#Learning.2C_memory_and_Alzheimer.27s

Again more references. I don't want to beat this subject to death but after 10 ears of intermittent kicking, biting and hitting, and three months of pacing and agression at night, when I find an answer which helps, I want others going through the same thing to benefit.

It does take about two weeks to kick in but the results are worth it. It doesn't improve cognitive ability except probably to the extent we are all better with sleep. However, why take questionable drugs with the horrible side effects we have experienced if there is an easier remedy ? I hated the effects of haldol, adivan and the litany of drugs my mother was subjected to. I just went for a standard sleep remedy that even non AD patients took!

http://www.eurekah.com/chapter/1958

http://books.google.com/books?id=j9muNxMW-rIC&pg=RA2-PA116&lpg=RA2-PA116&dq=sundowning+elderly&source=web&ots=mrHQjlc7Ev&sig=iyFd2h05CmJGh-EsDZUu9eBsDo8#PRA2-PA111,M1

Good luck

Pat

Pat,,thanks for the info and your experiences with drugs to combat the nasties that are a side effect of AD. The intermittant "stuff" by my wife seriously esclated about year ago. Our PCP has increased her Zoloft to 200mg per day and I cannot see that it has helped in the last month.

We go to see the neuro in April 3rd, and I'll try to avoid any more new meds., and suggest using the melatonin, 6mg at nite, instead.

Have you followed the Enbrel story? Too expensive for us living in NE OH. But I've read the "chat" on cinnamon, and I believe I'm going to try it. The meds for AD are not even slowing the slide to the deep now.

We went to her cardiologist yesterday who is also her primary - she has minor valve leakage and an abdominal aoritic aneurism. He said that if the melatonin worked to stay with it. She takes Prevacid, a minor dose of Norvasc for hypertension and Razadyne. (She tried Aracept - got nauseous and I switched to Razadyne which is fine.) She tried anti-depressants including Zoloft - no help there so out the door. Namenda and Haldol were horror shows and immediately terminated. Adivan made her dizzy and with osteo, not helpful so it was also terminated.

I noticed that when she did sleep, she was great so I concentrated on the sleep remedy and looked at circardia rhythm issues.

I might try the cinnamon next but I don't want to confuse the two until her sleep is stable.

We have finished week 3 and no violence or belligerence for the first time in 6 months. She had one off night but it was mild and I think dinner was too rich for her so I returned to her anti-inflammatory diet.

Good luck!
Pat

Pat,
I am also concerned about the side effects of anti-psychotic and anti-seizure medications that are prescribed for agitation and aggression. Are you familiar with Valproic Acid? Can you tell me anything about it? My dad is 92 years old and he is also on Seroquel once a day at night. He is not walking very well and his language seems to have deteriorated a bit.

Just tried to send this through so I hope I don't duplicate. The doctor wanted to put her on Valporic acid under the trade name depakote and I declined because of the horrible side effects. Same with seroquel because I found it just didn't help and could hurt. She did use Seroquel for a short period and at 50, her tongue was swelling. Check at www.intellihealth.com They have a good database which is easy to access.

I think the medical profession is without a remedy so anything that might control behavior is just thrown at AD patients. I had problems which were severe with my mother until I just took away all but necessary drugs - Prevacid, norvasc (minor dose for hypertension), razadyne, baby aspirin and occasionally levaquin for uti's. I now watch her physically to insure comfort - not mentally since melatonin seemed to do the trick for her. I don't know what I would have done if it hadn't helped.... I also found that the anti-inflammatory diet does help.

Pat

Update. We are now over a month with the melatonin. There has been no aggression, no pacing, hitting etc. No change in other meds. The only problems we ran into, as noted earlier were dietary which were resolved and later, one night when she refused to take any meds on a day she did not feel well for other reasons (hip hurt). She does sleep for about 7-8 hours per night which continues to be a miracle.

In the past when she was upset during the day she tried a minor dose of Xanex but it was never helpful. Now when she is off balance during the day, I do give her Xanex and it helps. We give it to her when she experiences a surprising awareness of her condition and is depressed as a result which is new.

Good luck!
Pat

Wow Pat...thank you so much for all the information you have provided on the Melatonin subject. This is my first reply on the message boards here. I realize you & many others seem to have much more experience than I, so I am very grateful that you have shared the knowledge you have gained from dealing with this unforgiving, horrible disease. I have used Melatonin in the past for veterinary purposes, & honestly it never really even occured to me that it might be helpful in my father's case. I've used so many "human" drugs for animal care, I admit, I forget they can actually be used for human care...lol! Thanks for this info, I am very anxious to see if this might help my dad, especially with some of the evening-time aggression & balkiness. Don't ever worry about anyone thinking you're talking too much about one subject...you have obviously been through a great deal & learned a lot over the years. I for one, would never be so arrogant as to disregard the advice of anyone who can help make the journey a bit easier for me & my loved ones. Thanks for all of your research! Liz

What a nice response !

I used to use melatonin for jet lag when I traveled and it worked very well. I never throught of veterinary use but since my interaction with the animal kingdom from a high rise on the beach is running into a 15 lbs or less dog in the elevator, my opinion shouldn't be given alot of weight.

My mother will be 90 next week and has extensive osteo but is ambulatory. We were very fortunate that the pacing through the night did not start until the 9th year of AD. From following her, it appeared that she was almost sleepwalking and seeking her mother perhaps because she was frightened of whatever she was dreaming about.

The problem is not only the impact on her quality of life but, after a few months, my inability to function. SNF's do not have the staff to follow a patient particularly one with osteo all night so you are given the choice of adivan or depakote or hiring a full time aide in addition to the SNF fees which is cost prohibitive. Neither choice was acceptable. Therefore a solution was essential which permitted the loved one to remain at home but without a $20/hour round the clock CNA. In our experience with melatonin, the fact that the aggession abated and the pacing during the day stopped was an unexpected side benefit.)

It would be interesting to hear reports from other caretakers...
Good luck
Pat

This is one of the most thorough articles I have read on the subject. It addresses, in addtion to sleep, improvement in cognitive function and protection against nerve damage.

Pat

Melatonin in Alzheimer's disease and other neurodegenerative disorders

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1483829

And again....
Melatonin: Double-barreled Weapon against Alzheimer's Already in Your Bathroom Cabinet

http://ezinearticles.com/?Melatonin:-Double-barreled-Weapon-against-Alzheimers-Already-in-Your-Bathroom-Cabinet&id=380641

Pat

Pat---Thanks for sharing. This is a problem that I've not been faced with...but...I saved the information in my file of potential solutions to future problems.

Hope that you do not mind. I took the liberty of sharing this information on another forum. Should you care to read it, the link to the thread is:

http://www.alzinfo.org/forum/viewtopic.php?p=93#93

Share away - thats what it's for. My heart goes out to people who are just starting down this road. We've had just about every problem - my dad had minor problems with dementia but passed on four years ago. My mother's problems are severe. I don't have time to read except for the Enbrel discussion so I haven't been in other forums and it is unlikely in the near future. So please pass the word, She is 90 this weekend so I don't know what the future holds. We are definitely running out of time.

I should tell you that I am seeing a cognitive improvement. I didn't want to get overly excited because it is mild but it is not just because she is sleeping which was my original thought. This is something more.

Good luck
Pat

Pam

Thank you very much. My wife just started the night walking about a month now. I have been using respiron and trazodone for sleep (not at the same time ) but they did not work. Your experience with melatonin gives me hope. I am going to call her physician right now. I will let you know the outcome.

Hi WK

So sorry you are going through a tough time. I will never forget the first time my mother took a walk. We live mid way in a high rise on the beach. She walked out the door at 4 am. I usually hear her but I was tired and she usually woke me first so it was never an issue. She walked out the door which locked beind her and walked into a beautifully decorated apartment down the hall. Fortunately a very nice college student lived there with his grandmother. My mother went to the phone - which she does not know how to work - and he found her. He gave her a glass of water and the concierge called me to get her. I put her in bed, sat outside the bedroom on the balcony watching to make sure she went to sleep and I was just overwhelmed for a number of reasons - all of which you know - except that the place was so beautifully decorated, I called their decorator to do our place......
So the moral is...if you need a decorator referral.....

FYI. I tried to lower her dose Saturday to 3mg now that she has settled and she walked all night. Sun. I returned to 6mg and she was ok. I am happy that people talk to their doctors about this. I won't talk to a doctor about her anymore. I just tell them what I want. Sounds egotistical but, after 8 years of garbage, I have had enough. Remember, they don't get anything from OTC drugs....

Good luck
Pat

Update. Month two.
Melatonin continued to be efficacious throughtout the month even through outpatient skin cancer surgery. In fact, the night before, she stayed up till 11 pm reading the Wall Street Journal Weekend edition at the hotel which was amazing since in Feb. she read the paper upside down. She slept through the night at the hotel.

We hit a snag when she went into the hospital for internal bleeding from a recurrent colon problem but with interesting results. First, the hospital gave her melatonin and the doctors found it more than interesting. Second, some of the nurses did not understand it and gave it to her at the wrong time (7am). Third, as before there is no solution when the individual is in pain.

We are home now and back on melatonin. So far so good.

Good luck
Pat

My father in law doesn't sleep. He stays in bed most of the day and gets very belligerent if anyone tells him to get up. We have tried sleep meds with the result that he is up every hour. When he is up he walks all over the house. He will sit down for a few minutes and then get up and walk around and sit somewhere else. He won't go outside even if you try to get him out. He is in late stages of this disease I hope melatonin will help and I will take your advice not to use the sustained relief formula. We have taken him off aricept and namenda with what we believe are positive results. I need to eliminate some worry my mother in law has about him. She is dying of cancer.

Re: Depakote We had mu FIL in a nursing home for three weeks because my MIL could not care for him. He acted out the first night and they put him on Depakote. I caught them dissolving his time release pill in water and having him swallow the whole thing at once. He was virtually comatose. It has spotty if any value at calming him down. The anti seizure and anti psychotics no longer have any effect on him. I sincerely hope melatonin helps.

My heart goes out to you and I sincerely hope the melatonin works. My mother did the same thing all day long - up walking about agitated - it was just exhausting and nothing seemed to work. We were very lucky with the melatonin although if someone is in pain, you have to look for a remedy that kills the pain and then work on the sleep. I just hate hate hate watching elderly put on haldol or depakote or any other "dope them up so they calm down" drugs. I went a little crazy at the hospital when some idiot doctor suggested it for my mother and told him that haldol was never used on the elderly except by doctors who were not up on current research. Fortunately many of the younger doctors are finally getting it.

Take a list of all psychotropic drugs and tell SNF's and hospitals he is allergic. They then have to direct their attention to the cause of the discomfort because they don't otherwise have a solution for disruptive behavior.

BTW, I do use Xanex at a very lose dose sparingly to complememt the melatonin.

Take care. Pat

Wow Pat, you certainly are on the ball about this disease and how to handle the doctors and hospital staff! Kudos to you and thanks from many of us in the same situation. I too have been searching for something to help my mother with her agitation but most especially sleeping at night. I am going to rush out and get some Melatonin for her today! She was prescribed Xanax as well, and we had no results from it, but, if the Melatonin helps kick that in, then all will be solved, for the time-being. I do find that the doctors play medicine roulette with this disease and I have consulted the pharmacist much much more than any kind of doctor or specialist because they know all of the side affects and combination effects and also are informed as to the newer drugs available. People should get empowered as far as their health practitioners go- you are correct when you just tell them what you want- period. Thank you for this thread you began. You are right on target and a breath of fresh air. Good luck, you are doing a fantastic job.

Thanks Vivienne

Sometimes I could just kick myself for that statement. (Other times not.) I just saw too much that disgusted me in SNF's....Wish the Alzheimer's Association would spearhead guidelines for medicine for AD patients in SNF's. If I hear Haldol or Depakote being used again *******!

Let me know how you do. I get alot of private emails on its success which is great but posting helps other visitors. Give it time to kick it. The only time it didn't work was when she was in pain. However, and with the exception of a ducolax night (colonoscopy prep), even when she was not sleeping due to pain she was not agitated/violent.

Pain stopped yesterday and she took melatonin last night and slept through the night. She told me this am that she wants a job because, "it's getting a little boring around here." She is 90....

Good luck

Pat

Thank you so much Pat for your advice on this. I have been giving only 3mg to Mom for about 3 weeks now, and it has made a HUGE difference. I am using the sustained release and they seem to be working OK. I bought some others, a different brand that were 5 mg not sustained release and we had a terrible experience...I have a feeling it was the brand. How do you know which ones are good? Do you have any experience with that? The GNC brand I bought seems fine, so I may go get the Non-sustained release from them and see how it goes. She still gets up in the middle of the night, but usually just to go to the restroom. But, I would even like her to stop that, since she wears Depends anyway, and when she goes to the bathroom alone she usually isn't able to pull them all the way back up so in the morning everything is wet! Sorry, TOO MUCH INFO???

Thanks again, Felicia

Hi Felicia
I didn't know what brand I used and had to check - it was Nature's Bounty and the only one available at the pharmacy. I did try the sustained release from GNC - it was all they had in stock but, as I said before, she has never been able to tolerate sustained release in any drug so it wasn't GNC which I like generally. One thing I noticed recently and this may sound a little strange but when I gave it to her with applesauce it did not work as well as with juice or water.

Not too much info on the bathroom - bowel movements are my reason for living lately. I bribed my mother $20 for one last week. (I was getting a little desperate.)She held back for a higher offer two more days. We put the commode next to her bed and don't use pullups or anything for that matter. I think when you are old and in a hurry - get everything out of the way....Works so far.

Vivienne
We did not get any result from Xanex until the melatonin. Tried valium which another poster had success with and it did work but she was so happy, I had chatty Cathy with me all night. Doctor thought she was pretty funny. I did too until the third hour.

Eclavelli
Could not stop thinking about your situation. I know you have probably checked his urine and bloodwork for infection. We also check for fungal infection which is easy to pick up at SNF. Most importantly, get him to a GI - he could be having colon or prostate problems. Sleep meds don't work for the elderly - they have the opposite effect. In fact, the older they get, the more drugs don't work. I have had more battles in hospitals with doctors who tell me a drug isn't supposed to have a particular reaction for the elderly yet the little suckers do. Try his drugs one by one and check for reactions. We can't even take Tylenol anymore!

Enough from me. I did have sleep last night so I am making up for lost time.....

Pat