My 87 year old father lives with my sister and her husband and does not sleep at night. He comes out of his bedroom multiple times, dressed in a different outfit each time as though it was the next day. She puts him back in his pajamas and then 30 minutes later, the same thing- he comes out dressed for the new day. This happens all throughout the night even though he takes Risperidone and Melatonin at bedtime. Is there any medication that will knock him out so everyone can sleep? If anyone has had any success with a medication, or different bedtime routine, please advise! Thank you!
Her previous neurologist prescribed Seroquel saying, “we give it to everyone, it works well.” What a joke. Within a half hour she became psychotic and homicidal. Her PCP and new neurologist both know she’s taking the gummy’s and are glad it’s working.
Here what I wrote in my latest book "Dementia Care Companion", available from Amazon on the subject:
Sundowning and Nighttime Issues
Many of the symptoms of dementia tend to get worse late in the day and toward the evening. During the day the patient might be able to go about their life without too much difficulty, while in late afternoon or evening they may experience increased confusion, restlessness, and anxiety. This is known as sundowning because the confusion tends to intensify during the dusk hours.
Sundowning occurs mostly in the middle and late stages of dementia. The compounding loss of brain cells over time makes it harder for the brain to process complex visual stimuli, such as the dimming ambient light and the lengthening shadows at dusk. Destruction of neurons in the brain also disrupts the body’s internal clock, which regulates night and day cycles (circadian rhythms) and related physiological processes. The result is a variety of sleep disorders that reach well past dusk and into the night.
Most elderly people do not enjoy a continuous eight hours of sleep and may wake up several times during the night. For those suffering from dementia, these sleep breaks can be accompanied with confusion of time and place, restlessness, and other behavior disorders. For example, the patient may wake up in the middle of the night, get dressed, and leave home, believing that it is time to go to work.
Improve the Living Environment
· Provide adequate lighting in the patient’s living environment. Dim light makes it harder to see things, leading to confusion and anxiety.
· At the end of the day before it gets dark outside, draw the curtains and turn on the lights to make it easier for the patient to transition from day to night.
· Ensure a safe sleeping environment. Equip the patient’s room for comfort and safety, including comfortable temperature, nightlight, and closed and locked windows.
· Install safety features to alert you if the patient leaves their room. You can use motion detectors, baby monitors, or similar devices.
· Pay attention to nighttime dangers. The patient may leave home in the middle of the night and not be able to find their way back. Or they may go into the kitchen, turn on the stove, and leave.
Refine Daily Routines
· Organize daily routines with a natural progression from morning to noon, through the dusk hours, and into the night. By the time you help the patient to bed, they should be primed and ready for a good night’s sleep.
· Schedule adequate physical activity during the day and prevent long naps. Long naps during the day translate to difficulty sleeping at night.
· Keep dinners light, while lunches can be more filling.
· Avoid coffee, tea, soda, sweets, and alcohol in the evening.
· Limit sensory stimuli during nighttime. Watch out for loud TV, noisy children, and lengthy visits from friends and relatives.
Reduce Physical and Mental Distress
· Watch for signs of physical and mental distress. Hunger or thirst, uncomfortable ambient temperature, fever, constipation, itching, and infection can disrupt the patient’s sleep.
· Do not resort to force to put the patient to bed. Restraining the patient in any way and using force will make the situation worse and lead to more anxiety and even aggression.
· Speak gently and make the patient feel safe. Say things like: “Everything is fine,” or “Don’t worry, I will stay with you.”
· If the patient suffers from sleep apnea (a sleep disorder in which breathing stops repeatedly during sleep), consult with your doctor.
It is possible your father has created his own routine of waking and getting dressed several times a night. If you can find a way to break that cycle and create a new routine in its place, he will want to repeat whatever becomes his comfortable routine. Right now, he's compulsively repeating an activity which is probably no more comfortable for him than it is for your sister and brother-in-law.
My husband was on it for a while, and he developed an involuntary twitching, just as shown in the commercials - Tardive Dyskinesia. And it provided NO calming benefit! I finally got him taken off of this medication, and it took a year for the involuntary body movements to go away!
Please, question his doctor, and ask if this medication is really needed.
Second - the miracle drug I found was Trazodone! It is considered very safe, non-addictive, and very little risk of negative side effects.
Try a dose of 50 mg a half hour before bedtime. It doesn't so much make a person sleepy, as it it relaxes them - physically, mentally, so it is easy to get a good restful sleep. The first time I tried it with my husband, his whole body became weak, like a wet noodle! So, I learned to make sure he is IN BED, before giving a dose! You can increase the dosage if needed.
I don't know if the nighttime activities you are describing is sundowning, but for someone with any form of dementia, compromised mental state, or confusion, the key to keeping them calm is CONSISTENT ROUTINE!
I mean, the same thing at the same time every day! Any small disruption in their daily routine can cause agitation! Even down to a Television show which they are accustomed to seeing at a certain time of day.
For instance, watching the Tonight Show could signal that it is bedtime. For an elder with dementia, their sense of time is skewed. So, a repeated activity at the same time every day is how they relate to time.
Even welcome visitors can disrupt their comfortable routine and cause agitation later.
Ive noticed my spouse goes back and forth a lot. Sometimes he goes right to sleep; other times he’s busy with his hands (fidgety) or chatty (word salad). I have a bed pad alarm that wakes me if he’s too fidgety during the night and he’s not too bad. He may be awake, but at least he’s not trying to get out of bed. He is bedridden, but still attempts to get up once in a while…that’s getting better.
Be patient with him, try and distract him or give extra love during sundowning. Easier said then done, I know.
Please check with Dr before giving him anything for sleep,
400 mg at 4:00 pm OR 400 MG AT 6:00 PM OR 200 mg at 4:00 pm and 200 mg at 6:00 pm
We used this for over 12 years. We adjusted the timing over the years for various reasons.
Make sure to use the glycinate version so you don't get loose stool.
It worked but then eventually stopped. Then we began a routince of tiring her out during the day: we had her folding a large stack of kitchen towels multiple times a day, sorting colored poker chips, sorting plastic utensils, etc. Her caregiver walked her around her house, walked her to the mailbox and set her up in a portable foot pedaler machine while she watched tv (for 20-30 minutes). This helped her burn both physical and mental energy. She only napped once a day for about 1 to 1-1/2 hours after lunch. Went to bed at 10pm, woke up at 9am. She didn't need the OTC Tylenol anymore for a long time. Then, even exercising her stopped working.
I realize not everyone is able to do this all day long with their LO (this was a paid family caregiver). Then 1 time my Aunt got past her bed barriers and out of her bed at night and fell and broke her hip. Went downhill from there.
Your Father needs more exercise and less napping (if he's doing that) but also meds at night so everyone can get rest. Or, maybe a MC facility is an option since his care needs will become more and not less. An elder with advancing dementia who is also mobile poses a special challenge since they are a much higher fall risk. You may want to consider putting his mattress on the floor to make it more difficult to get out of bed at night, or buy an adjustable bed that lowers significantly or a concave mattress.
When I first took over the care of my father, he had been allowed to sleep whenever he wanted and few of his behavioral problems had been disclosed to his doctor (my mother was his caregiver and was extremely ill so I certainly don’t blame her). I also have a few people who help me out so I can have breaks and I found they were allowing him to sleep all day not knowing he would then be awake all night. It took some time to slowly ease him into a regular sleep schedule and to adjust his medication but we have finally reached a point that he goes to bed at a reasonable hour, sleeps throughout the night most nights, and arises at 730-800am.
At this point he is on 50 mg of seroquel, .25 mg of Xanax, and a melatonin tablet right before bedtime. I’m not saying that will work for you, but that’s what works for him now. His physician has had to adjust the medication several times over the course of the last four years and I’m sure he will have to adjust it again.
I did a couple of other things that help him stay on top of him getting out of bed. I installed security cameras throughout most of the house but particularly his bedroom. I can check in on him throughout the night without disturbing him and, when needed, I can set the camera to alert me if he moves. Second I place a pressure sensitive mat next to his bed so that I get an alert whenever he gets out of bed. At this point, the only times he gets out of bed at night is when he wakes from a dream and is confused. I can usually talk with him until he wakes up a little more and the confusion subsides.
I know some people will say that the cameras and mat are an invasion of his privacy, but he is has late stage Alzheimer’s and I see them as protection for him.
Anyway, I hope you find some solutions soon as I know how difficult it can be caring for someone who wanders at night.
There are medications that can help. It may be that the medication he is on needs to be adjusted.
Also what does your dad do all day? Is he active or more sedentary? If he is more active he might be m ore tired and may fall asleep and stay asleep.
If there is an Adult Day Program near by that might help. Typically the participant is picked up in the morning and brought to the Day program they get a breakfast, Lunch, snack and activities and then brought back home.
But in all reality it does sound like your father now needs to be placed in a memory care facility, as they are better equipped to deal with all phases of dementia, including Sundowning.
Your sister not getting proper sleep is going to be detrimental to her health, and you certainly don't want her being in the statistic of 40% of caregivers dying before their loved one with dementia from stress related issues now do you?
It's time now to do what is best for all involved.