What is normal progression?

LaneyG

I’m confused about something. Maybe a dumb question. I’m not sure what I should perceive as further progression/decline that I should just accept vs. symptoms that require further managing. Here is the scenario. DH’s behavior has been manageable and I can usually redirect him when he starts to get upset about something. We used to enjoy movies together. Now it can be stressful because he needs to get the “codes” from the movie so that he can tell “them” he knows all about it. Similarly he has this compulsion to watch listen to his favorite YouTube music videos over and over again. This used to be something he enjoyed but now he feels like he must do it to “prove it to them”. I am not sure but I think he thinks the movies and videos are the answer to his being able to drive his car again. Of course he needs my help getting the “codes” and retrieving and getting the information from the videos. On one hand it keeps him busy. On the other hand I wonder if I should try to get him off this kick or reach out to his doctor. Does anyone else deal with ongoing delusions?

Pat6177

My DH had a couple of delusions in the past couple of years, each last roughly a week. In Oct 2023, he had a sudden drop in cognition and also started a delusion about working in this place and assorted details that shifted and morphed over the months. Sometimes I was both living here in the house with him and appearing in this workplace. Oftentimes, the workplace is here in the house and he will get up in the morning and ask where everyone is. I go along with it to the best of my abilities - where is everyone? Well it’s Sat so that might be why no one’s around. His neuro NP said there’s no need to medicate him unless the delusions are causing anxiety etc. I just go along with it and reassure him if possible.

At the time the drop in cognition and delusions started, he also started to not recognize me. I did contact both his PCP and his neuro NP just in case this flagged an issue like maybe a UTI but everything was ok, just ALZ progression. If the delusions came along suddenly, you may want to check with his doc and see if you should have him checked for a UTI or other problem.

harshedbuzz

@LaneyG

I'm sorry. This must be so sad for you to watch. Given that this delusion is distressing for him, I would consider medication if you cannot easily redirect him away from it. Another approach would be to restrict his access to TV and other screens as he seems triggered by them. My father had a lot of delusions. Many shows were upsetting to him. He was often confused by dramas thinking he was the victim; even TV news and weather frightened him. We took a two-pronged approach, medication to make it easier to redirect him and restricting access to potential triggers. I used parental controls on his set-top box to make certain kinds of program unavailable to him which improved things a lot.

HB

ButterflyWings

@LaneyG you got great feedback above. The silent UTI possibility is always something to check, if your LO has a sudden behavioral change to the negative side. It is usually the only sign for PWDs so even doctors sometimes don't suspect it. No burning or pain or odor usually, hence the silent urinary tract infection label. Ask for a culture, with the urine sample so the right antibiotic can be prescribed if so.

And HB is so on point about controlling (limiting) the things that go into your DH's declining brain in the first place. TV, radio, images, conversations all have a totally different impact on them and it lingers. Usually in our case it led to a delusion as DH tried to make sense of the "experience" even though his reality was not mine.

By late Stage 4, it was urgent for us to have medication help with his hallucinations (seeing and hearing things that weren't there and dangerous delusions (false beliefs) about intruders (he would weapon up with hammer, bat, pitchfork and butcher knife under the mattress!!!) He never felt or smelled things that were not there that I am aware of. Although I had another elderly relative that did experience olfactory (I think that's the label for the hallucinating odors. She had vivid descriptions of the favorite foods cooking, that she could smell as she neared 100 years old. Nothing on the stove, but she was certain it was!

ButterflyWings

Here is a list of the stages and signs of progression if you have not reveiwed this yet. Usually PWDs are determined to be in the Stage where they are showing even 1 or 2 of the behaviors, even though they often may seem to straddle 2 or even 3 stages some days, or go back and forth.

For example, DH is Stage 7 with 2-3 of the things listed there. But he never has shown all signs listed at any given Stage. And sometimes the most prominent behaviors are just now showing up from the previous stage.

The idea is that we prepare for their worst day, for safety's sake. Although it is natural to hope they don't progress quickly, and to pray for the best…we have to ensure that wishful thinking does not endanger our LO through denial of where they really are, or how quickly things can go south with disastrous consequences.

I'm sorry. Hang in there. We all are in the same leaky boat, paddling furiously to stay afloat.

ALZ Stages TamCummings (2).pdf

LindaLouise

My DH is very triggered by anything on the news, even the radio and movies other than Hallmark. Thank heavens for Hallmark! I end up listening to anything I want to hear via my air pods, hidden under my hair. The hard thing is that even phone conversations with my children or friends or my 92 year old mom, can also cause him to become extremely upset or agitated. I actually feel like I'm living a shadow life, trying to shield him form any stimuli that will trigger something. Walking helps - and his doctor is thinking about trying some different meds but at this point is hesitant (?) to do so. He is only 68 and doesn't need/take any medications so not sure what she is "waiting" for. My adult kids are worried as our world is increasingly shrinking and the anxiety is definitely constant for me. I went through this dementia journey with my Dad and it was soo different - he had anxiety and didn't like to be alone, but none of the agitation, etc. It truly is different for everyone who is unlucky enough to experience it - and so very different for caregivers depending on the way it impacts your LO.

Drapper

I have found that seroquel has helped with delusions and anxiety. Anxiety is not fun for anyone. Not all neurologist are comfortable with medications. I had to switch to one that was. Many different things were tried including anti depressants and things like Xanax , Ativan and , klonopin before seroquel. Meds help but not 100 percent.

l7pla1w2

https://alzconnected.org/discussion/comment/208284#Comment_208284

Of late, DW asks whether the drama we're watching on TV is real or fiction. I don't know what difference it makes to her, but real events, real tragedies, seem mildly upsetting.

[Deleted User]

The user and all related content has been deleted.

TyroneSlothrop

Delusions are unstable, at least with my DW; so I try not to interrogate them, nor interact with them. Of course my automatic response is to reassure her, but it’s more effective to divert, with affectionate gestures. It’s hard, but these delusions are not worth engaging.

Tyrone

ButterflyWings

@jennifer1995 Click on this link for a downloadable PDF of Dr. Tam Cummings stages and scroll back midway through the pages to a description of each stage. The guidance is that a PWD is considered at a new stage when they first begin showing a symptom or 2 on that list. You can see for yourself what stage you feel her delusions and other behavior indicate.

ALZ Stages TamCummings (2) (4).pdf

HERE is a different link to a chart summarizing key behaviors at each of the 7 stages. Not an exact match for what everyone experiences. DH had some of the same delusions your LO is having when he was in late stage 4 — this chart says 6. But he also was having UTIs during part of that time and it can create all kinds of havoc and escalation so… https://www.walkinlab.com/blog/seven-stages-dementia/