ALS and sundowners?

[Angela44]

My mom is experiencing what dr's and nurses believe is sundowners through the night. She is the sweetest woman during the day, but at night, she is extremely aggitated, her behaviours and mood change and she becomes extremely restless. She did not have any signs of dementia until just recently when we began to exhibit some short term memory loss during the day, Her spelling is off, she asks the same questions over and over, she doesnt know what time of the day it is. The nights are unbearable some nights she constantly thinks she can get up and down, she wants to sit on the couch which she cannot do, she has no real use of her legs only to be stood with help for a few seconds. She is just a totally different and uncomfortable person. Anyone else run into this with their PALS?

[brooksea]

First of all, I'm very sorry you are facing this in addition to the ALS diagnosis.

My husband acted the same way! He would ask the same questions over and over and he would forget conversations he had with people. He would also come up with laborious projects during the evening when I was slap tired and I just wanted to sit down for a bit. He would not take no for an answer and would try to do things himself if I told him to wait, which made everything worse. He then started getting (falling) out of the bed during the night to check on something he was obsessing about on the internet. He would not listen to me and it was just easier to go along with him or I'd have a bigger problem on my hands. He was very head strong and it was hard to distract him!

[Katie C]

OK... first you and her doctors need to drop the assumption that dementia equals memory loss. My husband had advanced FTD.. but he could tell you his name, address, phone number, my cell, my son's cell, everybody's birthdays, etc. Take a look at the book "What if it Isn't Alzheimer's" and at the ALS/FTD section of this forum.

That being said... YES.... FTD patients are very much susceptible to sundowning. The theory I've been told that seemed logical to me is that sensory input at night is much different, which leads to the agitation. Once she's been evaluated, the right combination of anti-anxiety and anti-depression medication can help a lot. Once we knew that's what Glen's issue was, his psychiatrist cut way back on the antidepressive, increased the the antianxiety med and added an antipsychotic. It helped a lot.

[brooksea]

I agree that FT dementia does not necessarily mean memory loss, but I can tell you, my husband was suffering from it (memory loss). I've read an article about the varying degrees of FTD and he fit one categorically! I've been trying to find the article, but I can't get to right now. That being said, she needs to be evaluated, if you think it's worth it. In the meantime, I should think you will have to put safeguards in place for her and ask for something to calm her.

[Katie C]

The article CJ is referring to is from UCSF and is linked from the ALS/FTD forum.

And to be clear... I was simply trying to point out that many doctors, psychologists, etc have a very narrow spectrum of symptoms they look for when evaluating for dementia and if memory loss is not present they assume there is no dementia. It's part of the reason behavioral variant FTD is so hard to get correctly diagnosed unless you luck onto someone who knows there are dementias besides Alzheimers. I even hard a therapist say to me fairly early on that Glen was fine, but Kevin and I together were just too strong a personality for him. I'd love to run into her in the Kaiser parking lot some time.

[jb63]

Sundowners happen in many illnesses and hospitalizations. It is called critical care psychosis in ICU's, slang is sundowners when they are transfered out of the unit. It is believed to occur from sensory depravation and and the repetative lights an noises from the equipment throughout the night. Darkness is very disorientating. Most people clear up when they get better, but unfortuantely we are not on that path. Just a thought....

[sadiemae]

I think this might be the article CJ and Katie mentioned

http://memory.ucsf.edu/ftd/overview/...tests/multiple

[momap53]

Excellent article, thanks sadiemae.

[Katie C]

Thank you.. that IS the link... and there are further links from there including an article that can be printed out and brought to your doctor who may not have FTD experience.

Good luck.