What percentage have delusions?

KathyF1

Just wondering how many of you who are caring for a loved one with Alzheimer’s have seen them experience delusions. Along with the typical memory loss, demand for my attention, constant questions, etc., my DH has delusions. In fact the delusions came years before the memory loss. We’ve been married 11 years. I talked with a college friend of his last week. He said he started worrying about him about 15 years ago. Was making things up that could not be true. I of course saw odd behavior but it was sporadic (loved him anyway) and did not manifest itself in a consistent way until after we were married. Now of course it is a daily thing. We started the January 6 riots. (of course not) His friend who he talked to the other day actually came to visit. (Didn’t). Rambles incessantly about a new fictitious friend he met that he needs to “go find”. Just wondering how common this is? The brain is such a mystery. He otherwise has all the typical symptoms of Alzheimer’s, I believe he’s in stage 5. He layers his clothes ( isn’t that odd?), digs through drawers, places things in strange places, is obsessed with feeding the dogs- I know these are the usual behaviors, but I know (most?) don’t experience delusions. Curious to hear from others whose spouses have been delusional. Thank you!

Rick4407

Hello Kathy, 

My DW had delusions early on that included a lot of agitation.  She was very effectively treated with Seroquel which continues to this day (4 years).  Dosage has slowly increased from 12.5 mg to now 50 mg with some periods where it is 75 mg.  Delusions are now pretty much past, occasionally delusional but no agitation and I usually just agree and we move on.  My DW is now late stage 6.  Rick

Ed1937

I don't have an idea what the percentage is, but my guess is that it would be pretty high. My wife thought I had a girlfriend. And after a recent school shooting, she thought people were trying to get in to kill us. The latter did not stay around that long. The spouse cheating delusion is very common.

60 falcon

My wife has delusions, hallucinations, and agitation daily.  Her's mostly involve people from her late teens when she was abused, traumatized, and the victim of violent crimes - at least that's what I believe..  She's late stage six.

When she's experiencing this, she's agitated and arguing and yelling at people.  She'll tell them to get out, go away, never come back, people are trying to kill her, they're telling her what she can or can't do, etc.  Eventually I, or whoever is around, becomes the "bad guy" in her mind.  When that happens, I'm told to go away, get out of her house, never come back, she hates me, she didn't trust me and nothing I do works to calm her or redirect her.  She can cuss like a drunken sailor.

It drives me nuts! She hasn't been physically aggressive towards me, I guess that's the only good thing.  Seroquel was effective to a point but it began having little effect or the benefits only lasted an hour or two, even after dosing was increased a few times. Now we're on to Respiridone, Trazodone, and Excelon patch.  These new meds seem to be working pretty good but they cause her to be less steady on her feet and kind of loopy.  

What I wonder is, do delusions and hallucinations go away as she progresses or is she going to be haunted by these things until the end?

Stuck in the middle

My mother had delusions, but they weren't all bad.  Some, like the one that my absentee brother worked in her NH, was comforting.

Just Bill

My wife's delusions start with my identity. She thinks Bill her husband is the guy in the picture from 15 years ago. When I take her to work I am Bill the supervisor. She will also confuse me with a Pat, Steve or Mike. All people she worked with 15 years ago. I am also Bill the caregiver. She will tell me what Bill the supervisor did at work and what her and Bill used to do when they were married. I am mostly Bill the caregiver and she believes me when I tell her I'm her husband but she has no memory of us. She always talks about me in third person. When I say I am Bill she says "I meant the other one". Then she seems to feel the house is full of people. She will say who is staying home ? Is anyone coming with us ? If we talk too loud she will shoosh me so they don't hear us in the other room. It's just us and a dog. She would see a lot of children. Little girls with doll eyes usually. There is a middle aged heavy set woman and a tall man that keep showing up. They don't communicate with her or even look at her, they are just there. Shes sees people in our pool. I have chased them out more than once. They don't seem to frighten or agitate her so we have been just going with it. I have told her there are 3 ways to go with these entities. 1) Ignore them. 2) Acknowledge them and ask them who they are and what do they want. or 3) Tell your doctor about them and he will give you a pill to make them go away. She is still aware enough that I let her have the choice. Her default "normal" is in constant flux from being fairly sharp and with it, to she just fell out of the sky and this is her first look around. And right back and everything in between. I could go on forever but yes lots of delusions. In fact I would say her reality is mostly delusions and very little if any real reality. Having zero retention and zero short term memory her mind is constantly trying to sort out the long term memories she has left and if there is a blank there is a delusion to fill the space.

harshedbuzz

Kathy-

My dad had delusions by stage 5; possibly sooner but I didn't see much of him in that era. In his case, his media diet played into his delusions. He was diagnosed in the hospital during some sort of meeting of international leaders; his takeaway was that the attending neurologist was the secret leader of the free world running it from the 9th floor of the hospital. The med students and residents were his minions and sang enthusiastically late at night. I have no idea what transpired, but by the time I heard that tale he'd been given a sitter. Later he'd watch mom's crime dramas and tell me about being the victim of whatever crime was featured then night before. This terrified him, so mom stopped watching them if he was awake.

He also had conflated memories which presented as delusions. I was often the villain in these. He often conflated my late sister's (his favorite and mini-me) bad choices as being something I did- like leave my children in a bar to go off with some random dude. Early in dementia, he day-traded away $350K which he never shared. Mom handled the day-to-day stuff, but dad (mis)handled their investments/retirement funds. My mom sold their places in MD and FL to move closer to me-- I signed as POA for both at settlement. In his mind, I sold the house in MD for $350K less than it was worth because I am stupid. These things looked like delusions on the surface but were confabulations.

Seroquel did help dial back the agitation and aggression around his reacting to his delusions, but they would resurface. 

HB

Bill_2001

I am going to venture a guess: 100 percent.

MaryG123

Even my very early stage DH tells lies which, thanks to you all, I now know is his brain trying to make sense of his confused world.  It used to astound me how he would “lie” to me about the silliest things, and they weren’t even good lies.  It made me so angry and we would have arguments about them that did absolutely no good.  Thankfully, I’m no longer angry and we don’t argue, as I just ignore what he says if it doesn’t make sense.  Now I’m just sad.

cw2502

Oh gosh Just Bill, this sounds almost exactly like my DH.  It all started with my identity!  I think I am 3 persons to him; Connie the office worker, Connie the caregiver and Lynn (Connie's helper).  It is so bizarre.  He also always thinks other people are in the house and might shush me to not be so loud (they are sleeping).  He will walk the house to see who all is here and then come back into the den puzzled that no one is there.  He initially was getting VERY agitated about me (I stole his wife's purse; what have I done with her??!!) so much that I was leaving the house briefly, but the Seroquel has done wonders; we've increased it recently.  And might have to increase it again soon!  He got realllly agitated Sunday night about "him!! her sister ... her brother ... you know who I'm talking about!" and was wanting to "knock the SOB's teeth out and blankety blank blank....." (something I won't repeat here).  He had not had his Seroquel dose yet.  He later was calm and nice and happy.  I can be in my home office working and he will come ask me where the other lady went, and vice versa. He can think the other lady is riding in the back seat of the car.  I could go on and on too.  He also does all the textbook Alz patient things.  Textbook!!  Lately, he keeps an overnight bag packed and will think the guys are coming to get him to go hunting, and will wait in the driveway.  Or he thinks we are supposed to be going somewhere in the evening.  Sometimes I'll appease him and tell him he will have to direct me, as I don't know the directions.  We usually end up back home in about 5 minutes.  While he is still very mobile, he is losing a lot of weight.  Appetite a big problem. So much confusion he can't even turn the sprinkler system on, of course.  All the things he has always done around our home; kept a beautiful yard; done all the repairs and projects.  So proud.  I feel bad that he can no longer do those things and I know it is eating him up.  Getting more and more frustrated.  My husband of 37 years .......

Jill N

My mom has delusions.  It was the first thing that really tipped us off that something was not right with her. She had negative delusions about me and my sister and our spouses. For a while, we couldnt tell if she was just drinking or if it was dementia. I think it was both.  She had been sober for over 25 years. After she was diagnosed we found booze everywhere.   Now that we think back there had been delusions starting a few years before diagnosis. Likely she was in stage 4 when they started. She is now stage 5.

KathyF1

Thank you all for sharing your stories. So far the delusions aren’t “bad” or cause him distress. I’ll remember the Seroquil if things get scary. Boy this is a tough journey.

Jo C.

Delusions are not unusual with dementia; my LO was delusion driven, but many of the false beliefs were mild and of no consequence, so needed no intervention.  However; my LO was one who when the disease evolved,  the delusions became floridly negative and caused much severe disturbance; that is when we sought assistance from the dementia specialist.

NOTE:  That your husband's friend had noticed the false beliefs fifteen years prior to onset of dementia; you may want to do some reading regarding, "confabulation."  This is not lying, nor is it about being delusional; it is not the same thing.

When a person confabulates, they really believe their own stories as true. Cause for confabulation can be from many different sources, but the most common are from injury to the brain from a fall or other physical issue; from having been born with fetal alchohol syndrome, or from alcohol abuse and other issues that cause damage changes to the brain.  This is can be the genesis for such story telling and for the person who confabulates it is their real honest to gosh truth even though not at all accurate; it is not their fault.

J.

T. Slothrop

Kathy,

My wife’s delusions are similar to those described by many in this thread, so thanks for starting it. 

She asks me where her husband is; have I heard from him? And when I tell her it’s me, she either chuckles at her goof, or swears it can not be true.  There are bugs in all the food; there’s a man who was here earlier, claiming to own half the house.  And of course, someone stole her money or her wine.  

She was diagnosed MCI three years ago, and these delusions are recent (3 months).  They are growing more frequent and durable. They do not cause anxiety; but I worry that they impair her judgment, and that she can not be left unsupervised. So I am actively seeking a MC setting where she could still have visits from local family members. She is physically active and very outgoing. 

Arghh. 

Tyrone 

KathyF1

Thanks Jo C. Yes he did have a head injury as a young man when he dive into the shallow end of the pool. He was not unconscious but nonetheless it was probably significant. I wonder if that combined with Alzheimer’s coming on started the confabulation.