MIL has advancing Alzheimer's/Dementia and is getting more and more difficult in the afternoons/evenings. Often suspicious of everyone, off in her own world, refusing to take meds and/or eat dinner. Of course FIL who also has advanced dementia and short term memory issues thinks this is brand new every day. She is in a memory care home, and he lives 2 doors down in AL. He visits her 2-3 times per day. She is fine and pleasant in the mornings, and early afternoons, but by mid afternoon the "wheels fall off" and she becomes negative, complaining, nasty, and uncooperative. Of course she has zero memory of it the next day, and often he doesn't either. Are there medications that can help with this? It seems worse with the days growing shorter. Any other suggestions?

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As I am not a medical professional, you should address this question to her neurologist. Yes, to those who've suggested Melatonin. Seek help from specialist for more.
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Reply to Llamalover47

I hear you loud and strong about the wheels falling off during the sundowing phase- my mother experiences it all - refusing meds, food and liquid, trying to escape, wanting to call the police because someone has stolen all her clothes or poisoned her bottled, sealed water, resting, activities, tv, music, memory books, one on one supervision et al, slides out of her wheelchair on purpose, throws tantrums, throws anything she can reach at staff. Her facility is only two years old and, while the staff are wonderful with aged care they are not terribly well trained at dealing with the breadth of dementia-specific behaviours. They are currently being retrained in this area and we are learning along with them. Together we have discovered that too much stimulation during the morning phase when mother is most lucid can trigger a major episode in the afternoons. We are not talking so much visits and visitors, it is more any frivolity or news from the outside worlds. Currently in eastern Australia we have a lot of spectacular bushfires, so the staff are only allowing TV programmes that do not take in news breaks. That sort of news is a very strong trigger. Nothing you can do will stop sundowning, but our experience has been to lessen the severity of triggers. How you deal with explaining that to your FIL will be very challenging.
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Reply to Shezza1

moms nurse recommends melatonin, Up to 40 mg 2 hours before sunset. I only give Mom 10 of continued release from Sam’s. It’s made all the difference, does not make her sleepy either. Also I close the blinds before sun set and turn on all the lights in th room.
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Reply to nancygist

Where my mom was, they would ask her if she wanted a glass of wine & most often she would snap out of it with a smile on her face in anticipation - I provided a small [2.5 to 3 oz] unbreakable glass that was decorated [to make it special] with her name on it & the wine - it was better than meds as little side effects with that small amount - the dr okayed it & it was easier on the staff too - they kept it in a fridge in the meds room along with the glass - easy peasy all around for everyone
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Reply to moecam
DILKimba Nov 18, 2019
Unfortunately MIL is a tee-totaler who would think she was going straight to hell if she had any alcohol. 🤣🤣🤷🏼‍♀️
I wish there were medications to help, but sadly not really. Mom could get a mild antianxiety medication that might help her relax a bit more in the afternoons/evenings. It is more about the diminishing light, tiredness, and things appearing confusing. Maybe an afternoon nap may help. More lights on is always helpful as the sunlight dims. Also, consistent routines and not too many competing stimuli in to have to deal with. It might be best for dad to visit her when she is pleasant and for him to be kept busy and away from her in the evenings.
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Reply to Taarna

The one that worked for mom's "periodic" episodes was Lorazepam, the smallest dose. ANY medication comes with risks, and one listed for this is mainly a fall risk. NEVER did she fall while taking this when needed and she was still walking without assistance of any kind. The nice thing about this medication is that you usually get immediate results - you don't have to wait for it to build up in the system. It would calm her for the rest of the evening and then she would go to bed.

Doctor should be the first source to request something, but not all primary care docs have experience with these meds. Pharmacist can give you all the details and answer questions about any medication. Some work for some people, some for others and some should never be taken with certain types of dementia. If something simple like Lorazepam doesn't work, you may need to get her to a specialist. Noted below, it doesn't take time to build up - you would likely know the first or second time she takes it.

As for FIL visits, at least until the sun-downing is under control: Clearly he isn't going to remember not to visit after X time or why. If the MC is locked down, can you work with AL and MC staff to perhaps redirect/distract/deter him from going after the start of the usual S-D time? Once they find something to control the episodes, he can resume his visits, but staff should be willing to just keep him from going there until it is resolved. EVERYONE wins!

Thankfully mom doesn't need this all the time and the Lorazepam worked for her. She only had to take it during the 5-7 days of UTI treatment (she became excessively unruly, demanding to get out, stating she had guests coming and triggered all the door alarms.) Within 10-15 minutes of taking this, she would calm down.**

When still living at home, mom didn't show classic sun-down syndrome (she lived alone, so didn't have anyone to rail at), but she did start an OCD routine nightly before bed, eventually lasting 1-1.5 hours every night. We had a camera just inside the door. She would check the sidelights, the lock, something in the kitchen (light on/off, later identified as the dishwasher), then the LR (again light on/off, which would shine through the pass-through to the kitchen cabinets.) We just had to learn to tolerate it as she had no idea she was doing this (I would get 2 audible sounds on my phone every time she tripped it, so I turned the sound off and periodically checked.)

At MC, they ordered it when she initially moved in. Unclear if they used much or any of it. She is fairly easy going, mainly likes to sit and read the paper, magazines, sale catalogs (favorite!) However, she did develop sun-down syndrome with that UTI, big time (of course on a Friday, after business hours, so no help!) She would be fine during the day. Her doc at that time didn't want to renew the order, because of the fall risk, but I argued with her saying she was more likely to get hurt/fall/hurt someone else when in this state, until she reinstated it. We have it on hand, just in case.

Question 1 - although they have tested for UTI, have they done a urine culture? Sometimes the UTI can be sneaky. While she may already have S-D, you mentioned it is escalating. Perhaps it is just the progression, but it can't hurt to run one more test. Definitely seek some kind of medication in either case. As I told that previous doc, it isn't fair to the person, the other residents, and the staff (I forgot to include ME!) to have her like this.

Question 2 - Has staff made any suggestions or ways to help her? I would expect this to be very disruptive (and can trigger issues with others), so they would want to curb it!

**Note: Mom's second UTI did NOT induce sun-downing, but DID lead to nighttime bed wetting (enough to soak everything!) UTIs create odd issues for those with dementia (I was skeptical seeing the suggested check when I joined, but I am a convert!)
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Reply to disgustedtoo

Difficult to do if she is in a facility but. In her room change lights to LED it is a brighter light.
Anti anxiety medications might help
Melatonin might also help but if she is not willingly taking medications that might not be an option.
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Reply to Grandma1954

My mom who resides in assisted living facility suffers from Sundowner Syndrome she would wander through house at night, and was even entering other residents rooms frightening them while sleeping. After doctor prescribing a couple of medications, that didn’t help, the third one was Seroquel and there has been an improvement with her sleeping and has reduced some of her anxiety. Unfortunately paranoia still pretty serious, but only getting up a couple times at night now.

Contact MIL physician for assistance with medication that could help. Wishing you the best.
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Reply to Kitty19
XenaJada Nov 18, 2019
The wandering of dementia patients in AL or MC is a big issue and I wonder why the patients cannot be fitted with some type of cypher-lock bracelet that only works for their own room. I had an aunt in one of these places and she never wandered into another resident's room, but many residents would wander into her room and rummage through her things or lay in her bed! It was maddening!
DILkimba, I hope that you guys find something that helps her. She may not remember, but man that has to be so hard to go through everyday. As they live in the moment it must be terribly frightening for both of them.

I would encourage FIL to only visit before the time she starts sundowning, at least until she gets on something that calms her down.

Best of luck getting something on board quickly that works.
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Reply to Isthisrealyreal
DILKimba Nov 16, 2019
Thank you. We’ve tried to tell him and have even written out the whys that he should tell her he will see her in the morning when he leaves to go back to his house around 3-4pm. Due to his short term memory loss HE doesn’t remember this happens frequently so he calls My hubby all upset as if this is the first time it’s happened. They are quite a pair. 😥
We tried different meds and doses before we found a med that worked. She gets Seroquel at around 4 (now It’s dark at 5). She also gets Ativan when she’s really agitated. It’s working so far
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Reply to jan135

Hi Windy!
For my mom the medication that worked for her, most of the time, was Seroquel. She started on 12.5 mg which is half the smallest dose available. She only took it once a day around 4:00 p.m in preparation for her sundowning. Yes, had to buy a pill cutter to cut those tiny pills in half.

Ativan had the completely opposite effect as intended on my mom, it caused her even more agitation and confusion. Finding the right med is most often trial and error which can be very stressful. We all want that magic solution, but dementia doesn't work that way.

Sometimes a geriatric psychiatric assessment is necessary to find the right combo of meds that will work. My mom was admitted for geriatric psych assessments on several occasions. It is a very individual thing. What works for one may not work for another.
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Reply to gladimhere

Maybe you could request whether the Nursing Home could trial a program for seniors at night. ElderServe at Night,” an innovative dementia care program
offered at night by the Hebrew Home at Riverdale, a senior care facility. The program has received national and international recognition with healthcare leaders from around the world visiting in an effort to replicate it.

The staff indulges the urges that dementia and Alzheimer's induce, walking with patients who crave a 2 a.m. adventure or taking evening trips to the circus or restaurants. 'We're kind of like the party house on the block,' said Deborah M. Messina, who is 32 and the director of both the day and night programs. The lights are on all night and the music is going.
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Reply to PreferNotToSay
gladimhere Nov 15, 2019
PNTS, what a great referral to a website. I had never heard of it, but there is a long list of elder related topics discussed there. Stick around so you can refer others to the site. Wish I had known about it when I was caring for mom! Thank you.
Sundowner’s Syndrome is common in Stage 3 of Alzheimer’s disease. It is when Competency of the patient to live independently and make legal decisions is no longer possible. I consider it the hallmark indicator.

I agree with other comments here about ruling out UTI/medical issues or recent med changes, first. Sundowner’s Syndrome was the clearly defining moment for us in caregiving. All the routines changed. My mother in law retreated to her bedroom most of the time, except when actively Sundowning. She became more dependent, incontinent, almost bedridden, and clearly had difficulty with current date, who we were, where she was, who she was, and her age/perception of self. We got a new version daily. Some of it was a past reality, some of it was fantasy/delusion born of desires/dreams.

Some of it was fun. I became a beloved daughter in law, instead of a hated woman trying to take over her home and stral “her man”. At times she thought her son was her husband! That subsided with meds...she eventually stopped recognizing it as her home, and thought she was visiting us! The stories she would tell!!! She lived an interesting life, and the blessing of caregiving was getting to know her in a new way, and thankfully, her warped sense of humor remained intact. She became more content, except during those episodes; medication changes helped with anxiety after dark, and keeping the lights on for her/tv on.

But, it also meant alot of LATE NIGHTS, or middle of the night wake ups to return her to her bed, as her biological clock was clearly out of whack. My supervisor at work could not understand sometimes why I requested FMLA leave to come into work a couple of hours late...just to get some sleep!!! Another family member usually took the day watch at 8 am-6 pm.

When it was really bad, my husband and I would alternate taking days off to catch up on sleep/housework/laundry. By the end, after 6 months of hospice care, we struggled to work even PT. After her death, the depression, and guilt of being thankful for release of that burden kicked in...and we both had medical issues that we had delayed care for, crop up. So, watch for burnout. It can happen, even when help is a tag team project. So, if you can, plan a leave of absence or time away after your loved one departs. It takes about a year to recover, atleast.
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Reply to missmacintx

Talk to her doc about meds. For my dad it’s Ativan. It’s a tough call to drug dementia patients but my feeling is I’d rather have him calm than paranoid, fearful and obsessive.
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Reply to Windyridge

Here's some tips from the Alzheimer's Association for dealing with/preventing Sundowners Syndrome:

Tips for Coping with Sundowning
Late afternoon and early evening can be difficult for some people with Alzheimer’s disease. They may experience sundowning—restlessness, agitation, irritability, or confusion that can begin or worsen as daylight begins to fade—often just when tired caregivers need a break.

Sundowning can continue into the night, making it hard for people with Alzheimer’s to fall asleep and stay in bed. As a result, they and their caregivers may have trouble getting enough sleep and functioning well during the day.
Possible Causes
The causes of sundowning are not well understood. One possibility is that Alzheimer’s-related brain changes can affect a person’s “biological clock,” leading to confused sleep-wake cycles. This may result in agitation and other sundowning behaviors.
Other possible causes of sundowning include:
Being overly tired
Unmet needs such as hunger or thirst
Coping with Sundowning
Look for signs of sundowning in the late afternoon and early evening. These signs may include increased confusion or anxiety and behaviors such as pacing, wandering, or yelling. If you can, try to find the cause of the person’s behavior.
If the person with Alzheimer’s becomes agitated, listen calmly to his or her concerns and frustrations. Try to reassure the person that everything is OK and distract him or her from stressful or upsetting events.
You can also try these tips:
Reduce noise, clutter, or the number of people in the room.
Try to distract the person with a favorite snack, object, or activity. For example, offer a drink, suggest a simple task like folding towels, or turn on a familiar TV show (but not the news or other shows that might be upsetting).
Make early evening a quiet time of day. You might play soothing music, read, or go for a walk. You could also have a family member or friend call during this time.
Close the curtains or blinds at dusk to minimize shadows and the confusion they may cause. Turn on lights to help minimize shadows.
Preventing Sundowning
Being too tired can increase late-afternoon and early-evening restlessness. Try to avoid this situation by helping the person:
Go outside or at least sit by the window—exposure to bright light can help reset the person’s body clock
Get physical activity or exercise each day
Get daytime rest if needed, but keep naps short and not too late in the day
Get enough rest at night
Avoid things that seem to make sundowning worse:
Do not serve coffee, cola, or other drinks with caffeine late in the day.
Do not serve alcoholic drinks. They may add to confusion and anxiety.
Do not plan too many activities during the day. A full schedule can be tiring.
If Problems Persist
If sundowning continues to be a problem, seek medical advice. A medical exam may identify the cause of sundowning, such as pain, a sleep disorder or other illness, or a medication side effect.
If medication is prescribed to help the person relax and sleep better at night, be sure to find out about possible side effects. Some medications can increase the chances of dizziness, falls, and confusion. Doctors recommend using them only for short periods of time.

Best of luck!
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Reply to lealonnie1
DILKimba Nov 14, 2019
Thank you. I had read most of that online. She is in Memory Care and we both work full time, so we have no control over a lot of her day. I do know that they do stay on a schedule, etc. she’s not at all cooperating with doing much activity. That’s why we wondered if there are any medications that might help with her anxiety/drama. My husband is going to talk to her doctors and see what they think.
Yes there are meds. Yes, check for UTI. Talk to her doc about something for this agitation that can be taken BEFORE her behavior goes downhill.
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Reply to againx100
DILKimba Nov 14, 2019
We have checked for UTI’s. This is not new behavior, but it’s increasing, becoming more dramatic. Every morning till early/mid afternoon she’s fine. This is definitely sundowning.
Have you discussed this situation in a meeting with her care team?
Has she been tested for a UTI recently? I would ask for this tomorrow.
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Reply to 97yroldmom

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