Sundowning and medications

ImMaggieMae

My husband has been showing signs of sundowning for the past few months, slowly becoming more intense. He is not aggressive or violent, acting more frightened than anything else. He is cooperative and dependent on me. I am caring for him at home. He did not have anosognosia in the beginning and appears not to have it now although he doesn’t talk a lot and whispers most of the time. According to his neurologist he is stage 6-7. He can walk, climb stairs, dress himself if clothes are put out and feed himself although I sometimes help. I have to shower with him.

He was put on Risperidone about a year and a half ago by a hospital psychiatrist, during a week long stay for extreme agitation and lack of sleep. He was not violent or aggressive toward other people, but pulling IV’s out of his arm and trying to leave. (I was not allowed to stay with him due to Covid restrictions, only visit during visiting hours.) He had been on a low dose of Seroquel for about a month before the hospital stay and on Aricept for a couple of years. The Risperidone had a very positive effect and he was “normalish” when he came home. Before the Risperidone he couldn’t dress or feed himself. The Risperidone was increased a little over time, up until now as the disease progressed. They prescribed up to 2mg per day as needed. The highest dose I have given him is 1.75mg per day, divided. He also takes Mamentine in the AM and PM and Gabapentin and 6mg melatonin just before bed for nighttime leg cramps. He always sleeps soundly for 7 or 8 hours.

This sundowning is different from previous symptoms. It starts at around 4 or 5:00 and lasts until 7:30 or 8:00. He seems to feel fear and his hands shake or flutter. If I sit next to him and hold his hand it usually stops while I sit there or at least calms down. I’ve tried making my own hand shake when I see this starting. He will usually reach over and put his hand over mine to calm me. I have been trying to give him the Risperidone doses at different times and amounts, only changing every 4 or 5 days. This doesn’t seem to make much difference. If I give him too much at one time it makes him nod off. It’s hard to tell how long the Risperidone takes to work. I used to think it was about 1-2 hours but I’m not so sure now. Diversion tactics other than getting him up and walking for a short time don’t seem to last long. He doesn’t want to walk more than about 5 minutes. Going for a ride seems risky now with the shakiness and he usually wants to go back home after 10 minutes or less. It’s still bright sunlight this time of year so more light doesn’t help.

Do any of you have a solution? Have your LO with sundowning taken other drugs along with the antipsychotics that calm without making them too groggy? We have a neurologist appointment in a couple of weeks and I would like to have some suggestions from people here in the trenches.

Jeanne C.

I'm so not an expert on this but we were dealing with increased agitation and anxiety in the late afternoon (along with a side of delusions). After discussing with doc, we moved his Risperdal to 3 pm and kept his Lexapro at bedtime. 4 to 7 pm are still our worst hours, but it is better than it was. And I see a marked negative difference if his dose is late (which has happened a couple of times due to paratransit being late from daycare).

ImMaggieMae

Thank you, Jeanne. Does your DH take the Risperdal only once per day?

Katie Roo

I think my DH with vascular dementia is sundowning, too. He has even said himself that somewhere around 3:30, he starts getting antsy and doesn't know why. He will sometimes just start talking nonstop, or go into the kitchen and putter around doing nothing, but then again he will start setting the table for dinner. (We eat around 6:30-7). By 6 or so, he has settled down, and he says its because he's looking forward to eating, and then watching TV and then getting to bed by 9pm. He is not currently on any medicine for sundowning yet, so I'm following this conversation. Other times, by 8pm, he is so aggravated with everything that he just says he's going to bed and grumbles all the way there. Not the same every night.

Jeanne C.

Yes, 1mg once daily.

ButterflyWings

Might he have a silent UTI?

Here are some links for sundowning. Mayo clinic suggests a bit of melatonin to calm as needed. I swore by that for a few years in mid-stages when DH was sundowning like clockwork and it was as if the "gotta go" switch was suddenly flipped. Such an elopement risk. Liquid melatonin, a few mgs dropped in his water or juice saved us many times. Now he has less stamina and is just generally more subdued, so it has been a while since I have had to resort to that little secret weapon. But he still gets antsy around mid to late afternoon. Every day.

Late-day confusion in people with dementia - Mayo Clinic

Tips for Coping with Sundowning | National Institute on Aging (nih.gov)

ImMaggieMae

https://alzconnected.org/discussion/comment/177032#Comment_177032

It’s always possible he could have a UTI and I have been trying to get a urine sample to test, just in case.

He takes 6mg melatonin right before bedtime with his other meds which I just edited and added to my original post. I had forgotten to add that. But we watch movies at night and he goes to bed a few hours after the sundowning agitation has stopped. I’ve never given him melatonin at other times. How long do you think the effects might last? I don’t want to put him to sleep for the night at 4 or 5:00, before dinner and don’t want to make him groggy, just calmer. How long did it last for your DH? Did you give it to him after the agitation had started or a half an hour or so before it was expected to start? It does sound interesting and safer than adding another drug.

Iris L.

Apparently the half-life of risperidone varies, some are fast metabolizers and some are slow metabolizers. Perhaps the doctor or pharmacist can help you with determining this for him, so you can know how much is still active in his bloodstream after a few hours. Also, don't give with tea or cola drinks.

Iris

ButterflyWings

Melatonin - I gave it right when sundowning behavior started ramping up. This is because it was not on a set schedule, exactly. But I'm lucky because DH is always ready to eat or drink something. So, a couple of times he refused the melatonin-spiked juice, but only a couple of times. And then I just left it right next to him and walked away which worked. He always drank the kool-aid as they say.

It never really knocked him out or made him groggy. Just instantly chill. 10 mg could occasionally put him to sleep but just for a catnap if so. And like Iris said, he doesn't get coffee, caffeinated tea, or such beverages any more. No sodas in our home, ever so that is not an issue.

ImMaggieMae

Iris, the doctor and pharmacist told me everyone metabolizes drugs at different rates, and that can change over time. That’s why they leave the timing and dosage to me, within their parameters of course. The pharmacist told me it has a long half life, but that it’s effective period is usually shorter and varies. Sort of hard to understand. We don’t consume caffeine at all and haven’t for years. Cola and teas other than herbal teas contain some type of tannin that can block the effects of Risperidone, even the decaf ones. But decaf coffee is ok. Weird, right?

Butterfly, thank you for the info. I was going to try the melatonin yesterday, but his sundowning was pretty mild so I ended up not giving it to him. He will willingly take meds. I haven’t had to hide them so far. That may be because he seems to know the Risperidone makes him feel better.

Just Bill

My wife started getting extreme anxiety in the afternoons about a month ago. Cannot sit still. Constant pacing from room to room grabbing something and bringing it from one room to another. Folding and unfolding clothes both clean and dirty. We keep those plastic bags from the grocery store for reuse and she has those all over the house partially filled with various random items. Her favorite place to reek havoc is the kitchen. She arranges and rearranges everything in sight. Her neurologist increased her zyprexa dose 5mg from one in the morning to one more at night. It seems to have calmed her down a little, but like a hyperactive puppy I have to wear her out a little bit to calm her down. Monday-Saturday we have a routine where we get up early and go do something after walking the dog first. We get home and then take a nap and she is manageable. Sundays are the worst because of our busy week we really don't have any planned activities. I call what she has "dementia boredom". She just cannot relax, it's like she is late for a bus that never shows up. I keep telling her she is retired all you have to do is be healthy and happy. No more work and no more worries. She is constantly asking is this done or is that done. Who is coming over, who is here, whats next, constant non stop who, what, when, why or how ? The Zyprexa has 2 good side effects it increases her appetite and makes her sleepy. I like when she sleeps it gives us both some peace for a few hours. She lost a lot of weight when she first got diagnosed and I tried fattening her up on ice cream which worked by the way. The downside of the ice cream was the sugar and any stimulant increases her psychotic episodes. So now she can load up on healthy food instead. No coffee, sugar or caffeine. She takes very welcome naps during the day and sleeps the whole night through so I always ask the question when there is a med change. Are her symptoms better, worse or the same. Definitely better. I have to confess my piece of mind stays intact because of the solitude I get when she naps. Her current meds are Effexor 75mg, zyprexa 5mg, mementine 10mg in the morning. Zyprexa 75mg, mementine 10mg, seroquel 25mg and aracept 10mg at night. The meds were added and adjusted as her symptoms progressed. She hallucinates heavily and she used to have psychotic episodes, and extreme anger. The anger and the psychotic episodes are gone, now we have to manage the hallucinations and anxiety. I think she is at peace with her hallucinations she doesn't seem agitated or scared. The anxiety is what we are dealing with now. The added zyprexa seems to have helped. If it gets away from us again I am a firm believer in quality of life for both of us through medication. Everything the doctor prescribed for a particular symptom worked when we needed it to, so we have been lucky there.

ghphotog

Memantine can react to different medications such as Amitriptyline in a pretty significant way so I'm sure incompatible medications can exacerbate symptoms and sundowning. My DW PCP put her on the Amitriptyline for sleeping and Fibromyalgia. Here neuro put her on Memantine and said to take her off the Amitriptyline as it will make her dementia worse. She was getting very worked up on the Amitriptyline, extremely scared, angry, agitated. After taking her off that medication after a week or so she calmed down considerably, at least for the last few weeks.