Any Suggestions - Agitation, Sundowning?

Alex_K

DH has mixed dementia.

DH has been Sun-downing for the past several months to the point where he gets into everything, gets agitated, will not sit down and when it comes to bed time he becomes angry. He can also get mean at times.  Is this part of the disease?  He has never been this way prior to the diagnosis.  He had a brother, now passed away, who had this issue but his wife did not remember what medications the doctor put him on to keep him calm in the evening.  For now my DH takes 25. mg Seroquel in the morning at 8:00 am, one at 1:00 pm, and one at bedtime.  It does not seem to help his agitation and restlessness from 3:00 pm until bedtime. The doctor said we could up the dosage but I am not sure extra would help. 

As for a caregiver other than me this would not help because he does not want anyone else to touch him.  He does not trust anyone else and sometimes not even me.

He cannot be easily distracted and I let him pace but he can get into all kinds of things and that makes me nervous.  Are there other medications I could mention to the doctor that we could try or is Seroquel the best one? Have you found that increasing Seroquel will help?  I just don't want to him to become worse than he now is with the agitation, etc.  I know medications can sometimes make the situation worse.

The sundowning has been going on for 3 months and I am at the point where we need to do something different.  We are not at the point for him to go into a facility since he can walk, eat, uses the toilet.

Thank you for any help you can offer.

Rick4407

Hello Alex K,  My DW has been on Seroquel for just about two years.  My scheduling is considerably different than yours.  My DW is almost always very pleasant in the AM,  She starts to get delusional around 3-4 in the afternoon - hence "sundowning".   

I give her first pill before lunch, second pill about 2 or 3 PM and then last pill 20 minutes after a very early dinner.  So around 4-5 PM.  That used to be good.  Recently she was refusing to go to bed at 6 (her previous normal) so now we both go to bed when she is ready 5-6 after she goes to sleep I get up and have a quiet evening.   It makes my schedule a little strange, but the quiet and peace of mind is worth the strange hours.  I'm trying to concentrate the medication in her when the need is greatest, late afternoon/early evening.

Good luck, Rick

jfkoc

Those are very small doses...I would try a bit more and see.

Jane Smith

Hi Alex, and I’m sorry to hear about your situation. 

Yes, all of these behaviors are caused by the dementia.

I agree with adjusting medication and seeing what happens. 

Sometimes  a specialist can be of more help than a primary care or general doctor for dealing with meds for dementia patients. I’m lucky to have a great neurologist who specializes in dementia care for my mom, but many patients also use a geriatric psychiatrist. 

I know that everyone has a different line in the sand, but a person with dementia can live in a facility when they are mobile, eating, and able to do other ADLs.  I hear you that he only wants you as a caregiver right now but eventually we all need help and sometimes, things we think won’t work out, do.  (I was 100% sure my mother would not accept living in a facility and that it would be terrible. I couldn’t have been more wrong and she’s been there for six years now. My only regret is not placing her sooner as it hugely improved her care and quality of life.)

Make sure you get help before you get sick or worse. An alarming number of caregivers die before the person they care for does.  If you don’t already have one, I would encourage you to get a Plan B and a Plan C in place.  What if you get sick or break your leg or need surgery?  It’s so much harder to make plans in the middle of a crisis. 

This is a really good resource that I found out about here:  http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf It explains things really well.  Best wishes to you and your DH.

ChrisBme

  Sorry you have to be here.. a lot of good advice here that helped me through my journey!

 Not sure what your DH diagnosis is but with my DW with FTD had major sundowning and at one time when I would get her to bed within minutes she would get very agitated and there was nothing I could do to keep her in bed and she would pace for hours very agitated. I had a recipe of citalipram 10mg at 11:30am then seroquel 25mg at 2:30 pm then melatonin 5mg at 4:30 pm. At 8:30 pm citalipram 10mg and lastly seroquil 25mg again at 9:30pm (Bedtime). I found that the citalipram eliminated the after bedtime agitation/pacing through wee hours of the morning. You will find that it's a constant change to find the right recipe as things will over time. Some medications differ with the form of dementia a LO has.

HSW

Hi, I noticed my husband getting agitated or not settling down near his sundown bedtime. Turned out he was unsure what he should do before going to bed.