Person with dementia needing constant reassurance
July 26, 2022 12:28 AM   Subscribe

How do you deal with a person with dementia who needs constant reassurance about things?

My grandma doesn't come across like she has memory problems, but she can, and will, ask the same question every 5 minutes.

She is very anxious, she's always been an anxious person but increasingly has become even more so. She needs reassurance about certain things over and over and over again. She forgets she's asked you for reassurance about a thing and will ask for it over and over again. Once a worry is in her head, it takes days for her to forget about it. She has never has therapy or ever learned any way to manage her anxiety or her mood. She has always looked to others to reassure her.

She is very old and has no hobbies. She doesn't socialise anymore or like to leave the house.

The constant reassurance-seeking would try the patience of a saint and I'll be honest I usually either get annoyed with her or I'll lie and say I'm busy and I'll tell her later. I find there is no point in offering reassurance as she forgets it anyway.

Is there a better way to deal with this other than just cave and reassure her about the same thing a 100 times? I honestly find it very stressful. Her anxiety feels contagious.

I am not her caregiver but am currently visiting. She is like this with everyone; her caregiver, her doctor, her few remaining friends. She has been prescribed an antidepressant which she takes, but doesn't really understand that it is an antidepressant (if you ask her she would say she is perfectly healthy).
posted by unicorn chaser to Health & Fitness (18 answers total) 10 users marked this as a favorite
Have you asked her caregiver about their strategies? Anxiety is not unusual in people who suffer with dementia and yes, the thing to do is to be soothing. If you can’t be actively soothing at least try to contain your frustration so as not to cause more agitation. She isn’t doing it to annoy you. Dementia UK link.
posted by koahiatamadl at 12:51 AM on July 26, 2022 [7 favorites]

I'm sorry, this sounds so stressful and sad. Is there any way you can distract her from her worries? Maybe you could gently say something like, "It'll be OK, grandma. Let's think about something else. Could you tell me about the time that (nice old story here)?" Even if she ends up telling you the same story over and over, it's gotta be better than watching the poor woman spiral into anxiety. Or, is there some task she did for a long time and still remembers how to do? Maybe you could say, "I promise we'll talk about that later, Grandma. But could you show me how to do this thing? You've always been really good at that." That could distract her and also give her a little confidence boost.
posted by Ursula Hitler at 1:15 AM on July 26, 2022 [4 favorites]

It is very stressful. In dealing with a family member in a similar situation, I’m finding that misdirecting is the most helpful. I have a short list of things I have ready — asking her to take me outside to show me how her garden is going; asking if she wants to go for a walk; having a clip of something on YouTube she’ll remember (or was a shared memory, like an old comedy bit we both liked); asking about an old, pleasant memory… in my situation, the music and movie interventions seem to be the best at keeping her off of her loops the longest.

The hard part for me are the transitions — and I’ve decided that ignoring the 40th repeat of the same anxious question is ok and just plunging into the redirect; or using a segue like,”yes, that WOULD be awful - how is your garden doing?…” or “I’ll answer that in a moment, but I wanted to show you…”

koahiatamadl is right — it’s about have strategies. Good luck.
posted by Silvery Fish at 1:18 AM on July 26, 2022 [10 favorites]

This reassurance white-board went viral in 2019 and something similar might take some of the load.

I find there is no point in offering reassurance as she forgets it anyway.
It's not that she forgets it, it's that any information you can give is irrelevant. There is no information in saying "Good morning, nice day, but they're giving rain this afternoon" to passing strangers but it sure does lubricate our interactive lives. Good luck!
posted by BobTheScientist at 1:52 AM on July 26, 2022 [25 favorites]

Reassurance does have a point. It provides temporary relief. Temporary relief is better than no relief. I know it feels really frustrating to say it 100 times. Maybe the way to think about is, you're not conveying information. You're convey a little care that lasts for five minutes... which is not nothing. Every time you do it, it's a good thing, like holding her hand if she were in pain. These days Grandma is living in the now, much more than you do. Reality is different for her.

I agree with the misdirection strategy. I developed an approach like this with my dad, and it worked well. The silver lining to having almost no memory is that distractions work really well, you can't remember what was bothering you just before!

There are books and other resources on communicating with people with dementia that give you some ideas on how to help your grandma and feel better yourself. I got a lot out of this one (which I see has ebook download).

Good on you for seeking ways to deal with this positively. It's not easy.
posted by i_am_joe's_spleen at 2:08 AM on July 26, 2022 [15 favorites]

It helped me to learn a bit about dementia. The person can’t really always absorb verbal information but they absorb nonverbal information really acutely.

My relative would get nervous when they saw things like a coat or purse (going out? Where?) or the lights of passing cars (is someone arriving?) or when they had to pee but didn’t realize why they were uncomfortable. These things triggered anxiety and looping thoughts.

It’s important to know that the things that they say may not always directly relate to the trigger - for instance seeing a coat sometimes made my relative start asking to find their spouse; they wouldn’t say “oh a coat, are we going out” they would say “where is spouse?” Repeatedly. But I knew they were asking because seeing my coat made them think it was time to go outside and they didn’t want to “leave” without their spouse. The anxiety about spouse was triggered by seeing my coat and me standing in their room. When I took off the coat and sat down - creating relaxed visual signals meaning “nobody is going outside” - that anxiety loop calmed down.

People standing in the room when they were lying in bed or sitting made my relative really nervous. Which makes sense… they didn’t feel safe being “the odd one out” or being “in a weak position”. They were in pajamas so seeing us in our coats made them feel vulnerable too. It was more about the visual picture we all created around them. If you imagined the room from their perspective it was more clear what made them nervous.

They had forgotten a lot but they definitely knew that they did not want to be lying down half-dressed with fully dressed people standing over them. When the coats came off and people sat down they got way calmer.

Another thing my relative hated was seeing a nurse on night watch with their phone had them agitated - why is that person in my room with a glowing machine?

See if you can look around from their perspective and intuit what is causing the anxiety. How did they used to like their environment- bright, dim, tidy, etc? Recreate that.

Add some nice comforting things to catch their attention like flowers or family photos (smiling!).

Play quiet relaxing or calm happy music they like.

If your tone of voice is saying “STOP ASKING ME” then she won’t be reassured. Try to keep giving gentle sincere answers. Your tone and smile and touch matter more than the words you say.

I don’t mean this in an insulting way but imagine you’re talking to a dog or horse or baby. Tone and calmness project reassurance. Try to centre yourself and use a loving kind tone. Your words are not what she’s hearing.

Dementia sucks. Sending you good vibes.
posted by nouvelle-personne at 4:19 AM on July 26, 2022 [60 favorites]

I am a big fan of Vicki de Klerk's work. She works with validation and it is a very practical, realistic approach.
She has many videos on YouTube
Her channel Validation Training Institute also has videos on self care for carers.
posted by 15L06 at 5:34 AM on July 26, 2022 [5 favorites]

My mom with Alzheimer’s does the same thing. I understand your concern and frustration. It’s really, really hard.
I use a variation of the whiteboard idea mentioned above. I had my mom write down the answers to her questions on a pad that she always keeps near her. When she ask one of her questions I can usually just say “Look at your pad. What did you write down about that?” It usually works and honestly, it has saved my sanity .
Good luck. Dementia/Alzheimer’s is a terrible disease and caregivers/family members definitely need support and ideas for how to get through the days.
posted by bookmammal at 6:43 AM on July 26, 2022 [7 favorites]

This is tough, very tough. Based on experience with my family, this sounds very normal for dementia. Try to understand that she cannot learn, will not remember, cannot use lessons learned in therapy - she has brain damage (dementia)! And much like a toddler, as soon as you figure out one solution, the problem will change. I'm sorry, this is really hard.

And honestly if you can't do this and are going to get annoyed - and I get it! - then maybe just don't see her. (I don't really don't intend to be mean but as you said, she won't remember whether you were there anyway but she will remember the "feeling" she had good or bad.)

1. try to find a one sentence run-on story, it can be the same one each time, that solves the current issue in the moment - oh I know you are worried about ... "door being open" but it is a very special door that was installed especially by your loving family so that it will not open and you do not need to worry about it though I know you do but I assure you that it is safe we would never allow it if it was not safe! Isn't that nice?!?"
(without concrete examples, hard to know what the issues are or what the solution might be, an example from my life was loved-one thought they had to leave and had no where to go so we said oh you know ... your husband took care of all that for you and set up everything so it is no cost to you - no cost! - and you don't have to worry about it!! where husband taking care and "no cost!!!" were the happy triggers for this person.)

2. immediately into distraction and on to a happy discussion to up the mood: Are you having lunch soon? what are you wearing today, what a pretty color! can I tell you about "some happy past story that you remember fondly"! I love seeing you, so happy to visit with you! I cooked some food from the garden and thought of you today remember you used to grow lettuce and tomatoes, I loved that! (A lot of this depends on whether she trusts you as a safe person to tell her safe and true things.)

3. realize you will have to repeat 1 and 2 again and again and again and again because - brain damage! - and yes it doesn't matter because it will repeat but in the moment you can provide a little bit of peace and love and she will remember that feeling.

4. there are medications. It is tricky because healthcare has to be careful about "drugging" people. However, I know I would prefer to be a little drugged/sedated than crazily anxious about what I can't quite remember but I know it is bad bad bad. Seroquel is an example. Valium, Xanax for bad days. Ask for something because right now the anxiety is making life really really hard for her.
posted by RoadScholar at 7:06 AM on July 26, 2022 [3 favorites]

I'm in the same position, and basically nothing works. Not weak drugs (we had a lot of hope for CBD or actual mj given it's so touted - LOL it does nothing), not music, not a pet, not children.

Redirecting works occasionally, but it requires the patience of a saint. And unfortunately, he will ask literally all night long. Drugging with serious drugs helps if you really need a break. Leaving the room when they are angry seems to work the best.
posted by The_Vegetables at 7:19 AM on July 26, 2022 [1 favorite]

We are trying to look into other things, like diet, exercise, sunlight, clothing, less caffeine/sugar, re-arranging the room, etc but have honestly not found anything helpful yet.
posted by The_Vegetables at 8:16 AM on July 26, 2022

For my family member, this got to the point where dementia-related anxiety was messing with his sleep and things were getting really untenable. We found that Seroquel was very helpful for the anxiety and his sleep. I know it can feel weird to add mind-altering medications to the mix when you're already dealing with brain problems, but it has been a huge help. I guess you could call it "drugging" him, but we haven't noticed any major side effects at a low dose. It does take some trial and error.
posted by cakelite at 9:19 AM on July 26, 2022 [1 favorite]

One thing that worked a treat for us is getting our dementia person a very large set of colored pencils and some drawing books. This focused her anxiety to a physical activity and now she spends countless hours engrossed in the colors and filling in the spaces. She also has blank drawing pads where she makes really psychedelic abstracts that looks like she's on the most vivid acid trip of her life. This activity worked better than all the iPads, word puzzles and memory games we had tried in the past. Perhaps you can find something similar, and I hope it helps.

If you do try the colored pencils, I advise you to keep the electric sharpener separate, and sharpen the pencils for her when she needs a new point. Our person sharpened all the pencils at both ends until they were dust out of repetitive motions, so be aware of that.
posted by effluvia at 9:38 AM on July 26, 2022 [3 favorites]

You might find videos by Adria Thompson helpful - she offers a lot of great advice for caring for people with dementia.
posted by ThePinkSuperhero at 9:41 AM on July 26, 2022 [1 favorite]

Once a worry is in her head, it takes days for her to forget about it. She has never has therapy or ever learned any way to manage her anxiety or her mood. She has always looked to others to reassure her.

I've worked with people who have memory loss and have had family members with dementia. In general, I found that finding a short sentence that provides some kind of (temporary) reassurance without engaging too much was a sweet spot.

For example, my grandfather spent an afternoon really worried about a pallet that needed to be unloaded to get the shelves restocked (he hadn't worked at the grocery store in over 60 years). I settled on telling him that I was making sure it was taken care of and then moving the conversation along to something else. My grandmother found working through a crossword helpful (they were crossword people) when he was stuck on something.

Sometimes it would help to engage a little more, especially if it's a concrete issue. When I worked with patients, sometimes they really wanted to talk about another medical problem that was outside of my scope, like a rash. After confirming with the family or caretaker that the rash was being looked at by the appropriate medical provider, I found what worked best was validating their discomfort/annoyance (that does sound uncomfortable! I'm sorry you're experiencing that), reassuring them it's being taken care of (Dr. PCP is going to help you with it), and then moving the conversation to the reason for their appointment ( right now I'm going to help you with X....).

In both cases I'd have to repeat myself, but by having a fairly formulaic response I found I could remain detached enough that I didn't feel sucked into the worry itself and trapped in a never ending circular conversation. Yes we'd sometimes wound up at the going over the same point multiple times, but we were always able to move beyond that. It felt like brief detours rather than the focus.

If you can, it may also be helpful to try to separate her historical anxiety from her current behavior. Even people who don't have a history of anxiety can become anxious with dementia. Which makes sense: the world is becoming harder to understand. They may know that they're forgetting things, which is nerve racking.

The person also can't pick which things stick in their mind and what slips away, so even if she had been to therapy any compensatory strategies wouldn't be useful. And the forgetting your reassurances isn't because she's not paying attention to you. She just isn't able to remember them.

You probably know that, but I always found it helpful to keep this at the front of my mind during these interactions. The person I'm talking to can't think their way out of the cycle they're stuck in and I'm not going to be able to completely pull them out of it either. But I may be able help get them out of it for brief periods, which isn't nothing.
posted by ghost phoneme at 10:43 AM on July 26, 2022 [6 favorites]

The things that you say or do aren't, unfortunately, going to help very much. Even if your grandmother did have coping mechanisms for dealing with anxious thoughts, she probably wouldn't have access to them to use them to calm herself. This is why she keeps asking you.

In dealing with my dad in the earlier stages of his (aggressive and early-onset) dementia (he's now mostly non-verbal and lives in supportive housing), I found it much easier to offer a supportive response that helped address the source of his anxiety - when I stayed with him while my mom was out of town taking a break, for example, he kept asking when she was going to be home, over and over and over again - and then distract him with something else.

With adults with dementia it's difficult because they're adults and they once had access to the full range of what we consider to be adult behaviours, but they don't anymore. I found it much easier to think of my dad as needing to be supported in the same way a toddler would need my support, because the two groups have a lot in common, we're just used to it in toddlers but aren't used to it in adults. This involves a lot of briefly addressing of the undesirable behaviour in a constructive way for both parties and then redirecting the person's attention. This also involved removing items from his environment that resulted in undesirable behaviours.

It totally sucks; everything about dementia totally sucks and is very difficult to go through on both sides. However, when your grandmother is doing this, please try to remember that she is a lot more unsettled than you are. Please try to treat her with as much loving kindness as much as you possibly can muster and take breaks to be mad and sad because you need to take breaks. It sucks so bad and I'm sorry you and your family are going through it.

She has been prescribed an antidepressant which she takes

My dad takes an anxiety medication that seems to help with this kind of preoccupation. Maybe this would be helpful instead or in addition to the anti-depressant (which is a surprising medication to me).
posted by urbanlenny at 12:06 PM on July 26, 2022 [2 favorites]

I found it was helpful to remember (after the 100th time for me), that it was always the first time for Mum when she asked a question. Hang in there, it's tough, but tougher for your gran.
posted by kate4914 at 5:03 PM on July 26, 2022 [2 favorites]

Oh one more practical thing - older people have lower muscle tone so they don’t fully void their bladder when they pee, meaning they are prone to bladder infections - which exacerbate dementia tremendously.

And some dementia medications cause diarrhea / cramps (and having diarrhea in a depends brief or when you can’t wipe well is a recipe for a urinary infection …. And having stomach cramps you can’t understand or explain is a recipe for anxiety and challenging behaviours.

So if she is having bowel issues or loose stools, see about adjusting her medication.

And if she ever seems to get noticeably worse - like agitated, confused, angry, zoned out, memory suddenly worse, trying to escape more, wandering more? Any kind of “step down”… Check for a bladder infection.

It’s just a quick pee test, and if she has one, a few days of antibiotics. My relative had bladder infections back to back, like 8 in a year and they caused so many behavioural issues. Always advocate for pee tests - it makes them so miserable and it’s so easy to fix!
posted by nouvelle-personne at 7:51 PM on July 28, 2022 [2 favorites]

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