My husband, for whom I have been caring for physical problems for nine years, now has very quickly plunged into dementia. How do other dementia caregivers handle the constant pleas for help to repeat actions over and over, like putting on a shirt and taking it off repeated for hours?

It's tough when someone gets fixated and is in a dementia loop to get them out of it.
You could try distracting them with something else like a snack or even a toy to play with. Sometime this works, other times is doesn't.
I've been in elder homecare for a very long time. I learned early on that you cannot repeat the same the answer or action over and over for hours on end. Stop doing that because it will not help your husband or you to continue.
If he wants to keep taking his shirt on and off all day, let him do it. Don't help him with it. If he asks for help tell him 'No, I can't help you with that'. Say this a few times. Try distraction, then stop acknowledging the behavior altogether.
The same when the repeating loop is going on. Answer a few times then stop answering. Don't stop talking to him. Just ignore whatever the topic of dementia loop is. It will stop.
Helpful Answer (19)
Reply to BurntCaregiver
Chlokara Sep 13, 2021
Thank you.
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One of the meds the doctor gave my husband for sleep caused that reaction. I put his shirt on him and helped him take it off for 30 mins. It was the o e and only time he ever hit me. It was either Seroquel or Risperdal. I quit giving it to him and the behavior stopped.
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Reply to Maple3044
disgustedtoo Sep 13, 2021
While posting a comment on another topic, two meds came up, Seroquel being one of them. I generally have to do some lookup, as I'm not one to take drugs. This one seems to be a really odd choice for dementia. It is primarily used to treat conditions like "...schizophrenia, bipolar disorder, sudden episodes of mania or depression associated with bipolar disorder... (WebMD)

Apparently it is prescribed "off-label" for some dementia patients, seems like perhaps Alzheimer's and some search "hits" indicate it as much more of a potential to Rx for dementia. Yet another WebMD page that lists contraindications lists dementia in elderly patients...

So, WE'RE supposed to know???

For myself, unless it's sometime simple, like an antibiotic, I research what I can about drugs. My preference is to avoid whatever I can, especially if there are "natural" ways to correct the "issue". Example - my cholesterol was too high, and immediately doc wants to write Rx. It took a while to get the right answers (they were clueless back then!), but proper exercise, eliminating items that had partially or <gasp> fully hydrogenated ingredients, sugars, etc and eating better foods resolved the issue. The second example for me was Fosamax. My research resulted in a firm NO.

Anyway, for this med, it was perplexing, because it is often Rxed for dementia, but clearly isn't intended for it and all too often it seems to cause more problems than it resolves!
It's a closed loop they go through for a time . My grandmother went through several loops over time where she would ask , worried , about her mom or long deceased relatives over and over or one where she'd pack and unpack her handbag and spread the contents all over her bed for hours. I let her .
When she asked about her mom I'd just tell her she was fine .
When she spread the stuff in a mess all over the bed I let her do it . It certainly kept her occupied . It didn't harm me and when she got tired or it was time for food I'd say " let's put this away so we can have some nice tea shall we ?" She loves tea so it worked,.
Sometimes after tea she'd start with it again. I'd read a book or do laundry or nap in the same room lol.
No harm no foul .
Sometimes , she'd ask where something was, her bank book or a photo and I'd find it for her but after 6 or so times I'd say " it's in there mama , just have a look in that pocket there ". It was draining but hey , it calmed her down .
As long as hubby being shirtless doesn't cause an issue let him have his barechested moment . When he asks for help tell him " see if you can get it on " or " I helped you already, why don't you see if you can help me with this instead "? And give him something to fiddle with .
Did he have hobbies before or interest in a particular subject? Maybe you can show programs pertaining to that or give him safe items bound to the hobby like a football to hold or a fake plant if he liked to garden .
My gran loves babies so I gave her three baby dolls and let me tell you, worked like a charm to distract though sometimes she tries to feed them her tea but that's another issue lol.
Good luck .
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Reply to Lanfen74
IamAmy Sep 13, 2021
Love your response!
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Anytime someone describes the behavior change as "quickly" or "sudden" it may mean he has a UTI. If I were you I'd take him to Urgent Care to discount that he has an infection. The elderly get UTIs a lot (especially women) and it's not necessarily related to hygiene but to physiological changes. Often the only symptoms are behavioral or personality. You want to get this checked because an untreated UTI can turn into sepsis. It is treated with antibiotics. Best to make sure this isn't what's going on with him. Then you can move to other treatments.
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Reply to Geaton777

Sudden changes in behavior warrant evaluation by a doctor - right away. Usually, it is an infection that is easily "fixed" with antibiotics. BUT, it could also signal a stroke which can be deadly serious.

Repetitive behaviors are difficult for the caregiver. Try diverting him to other activities, especially those that engage sounds/music, pictures/new views, and stimulating his other senses. If he appears anxious or agitated, his doctor could probably try a course of anti-anxiety medication.
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Reply to Taarna

I think almost all dementia patients develop behaviors that normal people see as bizarre and sometimes scary. As long as the patient is not hurting themselves or others, it is best to let it run its course because another behavior usually develops later to replace the current one. My Patient developed a habit of chewing on wash cloths. He would get them soaking wet with saliva, We would change the wash cloths every few hours.

Make sure you are checking his vitals daily. Changes in behaviors can indicate a change in his physical condition. UTI is sometimes difficult to ascertain, but helps to observe his urine color and smell.
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Reply to Ricky6

My dad would sit in his rocking chair, eyes closed and say Help me help me help over and over. As he went through the stages he stopped the help me and replaced it with other weird eccentricities. He went through a stage of sleeping with his shoes on. with my dad we had two key words that distracted him Ice Cream and Tea. which would calm him down or distract him from what ever was annoying/upsetting/agitating him. My best wishes to any and everyone who deals with Alzheimers and Dementia patients on a 24/7 basis.
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Reply to shaynewelman

I want to commiserate with you about this type of behavior. My sister went through a very long period where she would plaintively ask me to help her to go to the bathroom. She would walk in and then not want to pull down her pants. This would happen every single minute for at least an hour. I know that she could not discern whether she had to go or not, which led to severe constipation. The pleading broke my heart. Once I lost my temper and slammed the bathroom door, causing one of my kids' treasured elementary school art projects to fall off the wall and break. That was a message to me. So when I couldn't take it anymore I walked into the other room for awhile. I wasn't successful in distracting her very much, sometimes with ice cream! Sometimes, lorazapam (Ativan) helped to calm her down and got her to nap, which always "reset" her. Sorry I can't be more helpful, but I want you to know that I HAVE BEEN THERE and it is a terrible feeling not to be able to "help." My sister pretty much stopped speaking about 9 months ago, but paces all the time now and has a grimace on her face sometimes. Not sure which is better....
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Reply to SusanFeig

For elders - change in behavior can be related to all sorts of stuff.
1. Call medical provider - need to check for UTI or other infection,imbalance in fluids and electrolytes, changes in blood count, etc. If you can go to PCP or urgent care connected with your PCP;s health system, that is best. All records will be accessible to all providers.. (An outside urgent care won't know enough to get a full picture.
2. What are recent changes? Medication changes (new ones, changed dose, changed time of administration,missed meds) can all trigger behavior changes.
Changes in daily living - new caregiver, recent loss of function/autonomy, having to use a WC instead of walker, emotional distress of some sort, even change in schedule- can upset the elder who lacks words to describe the distress.
The repeated request/phrase is communicating distress of some time, but may not be what is needed. If you have done the requested task x2, try other distractions or soothing strategies. Don't argue or scold, maybe turn off TV if it is on, etc...sometimes the person is anxious or overstimulated...
Also check incontinence briefs/pads and take elder to toilet. These are often the source of the distress.
Medications to alter behavior might be needed, but only after all of these other steps have been done.
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Reply to Clairesmum
disgustedtoo Sep 10, 2021
Definitely blood and urine tests first (urine culture is better than the dip stick test.) Medications can do odd things too, but start with the checkup.

If all is ok medically, then trying redirection, refocus him onto something else. Or after putting on or taking off and he asks again, beg off to tend to something and say you'll be right back. He may forget while you're out of the room. Sometimes these work, sometimes they don't, but it shouldn't hurt to try (at least once or twice, then back off and try it again another time.)

If none of this works/helps and all is good medically, then perhaps an anti-anxiety med, minimal dose, can be enough to take the "edge" off might help. Although it can happen any time of the day, a lot of these "OCD" behaviors are part of sun-downing, which usually happens later in the day/early evening. My mother's only "foray" into this was brought on by a UTI. She was still mobile, but in MC - she "had to get out", "had guests coming" and set off every door alarm multiple times. In the morning, it was like it never happened! Note that there are elders who don't have dementia that develop dementia-like symptoms or behaviors because of UTIs and/or infections.
Definitely check for a UTI or other medical problem. Then, when the repetitive actions start the best move is distraction to try and stop the loop. With my various dementia clients I have learned some useful tricks for distraction. A set of dominos can be stood up in a row so they fall one by one when the last one is knocked over. After an initial demo the person with dementia can often self entertain with them.
A set of wooden blocks, or the game Jenga (chunky wooden bars) can be piled up and knocked down. Don't get caught up on whether they are stacked "correctly" as long as they are providing some interest!
Sorting a pile of coins into nickels, dimes, pennies, and quarters. Depending on the person they may be able to drop them into wrappers, or there are tubes used to count and wrap coins. Even laying coins out on the table, stirring them up, lining them up. Place pennies in a circle around a quarter to make a flower. Jigsaw puzzles with large pieces are good, but keep it under 50 pieces.
In a memory care or other facility invite them to go for a walk. Look at the pictures on the wall and talk about them. "What a pretty garden. I would love to walk through it. Which flower do you like best?"
If there are seasonal decorations out watch for them. How many pumpkins are out. Can you find pictures of Santa Claus. Look for elves, or Easter Bunnies or shamrocks. Usually you will have to point them out, but get excited about it.
And always remember that your mind operates much quicker than theirs so S-l-o-w d-o-w-n.
Don't ask too many questions and keep them simple.

But if distraction isn't working and you can't engage him in a different activity you just have to accept that this is his reality now and there is no fix. But the next stage will come along.
It's OK to be frustrated, but not beneficial to share your frustration with him. Go outside and walk around. Go up in the attic and scream. Get out of the situation briefly.
You can get through this. It's not easy but it is possible. My heart goes out to you both.
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Reply to swanalaka

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