Ep. 5 - HALLUCINATIONS & DELUSIONS in Lewy Body Dementia

Lewy body dementia (LBD) distinguishes itself from other dementias in many ways. HALLUCINATIONS & DELUSIONS are a large component. People living with LBD, caregivers, and expert physicians share their personal experiences.

This is Episode 5 of a special 10-episode series filmed by the Lewy Body Dementia Resource Center to help families, health care professionals, and the general public understand LBD and to bring much needed AWARENESS of this misunderstood disease which is not rare.

[L.J.H.-sgeb]

Thank you for your videos. My Mom has Lewy Body Dementia and has shared amazing stories with me of things she has been as if they were normal. Such as, a tiger with black and white wings. He is the leader of the rescue team where she had to serve food to and then her late Uncle Dan came by to tell her the flight is being scheduled soon. He will becoming back for her. Just breaks my heart. She isn't afraid of it either. She is very accepting. I embrace this time either way. Love my Momma something fierce. ❤

[Denellsings]

Thankyou for your straight forward description of Lewy Body Dementia. My dear husband is a Vietnam Vet. There is no hx. of Dementia in his family. He was contaminated by Dioxin. For years he has had PTSD. He had a heart attack and has never been the same. Our neurologist diagnosed him with LBD 3 months later. We have been in the dark as to what is the future. 😢 As we listened to yoyr discussion he shared with me his ongoing hallucinations. People and shapes that he sees. They frighten him. Now he understands. He is proud and hides his symptoms if he can.
Thankyou

[nanajanwalker]

Thank you so much for this information. My husband has recently been diagnosed with LBD.

[AprilPettiford]

My mother is going through this right now. This is very difficult for the family. Thank you for this video.

[monalangbeery]

Thank you so much for including the interviews of people living with LBD.

[zzzvfmp]

I love the twilight zone reference..my hubby and I love that show. At times I feel I'm in it too.

[gabrielletanner]

I looked after my husband for four years on my own. He was diagnosed with ALTZIMERS dementia. About a year afterwards he had a stroke. He suffered rheumatoid arthritis for sixty years. Ulcerated mouth for fifteen years. Skorjens disease (drying of fluids in the mouth etc) . He was in bed mainly four years. Shortly aftewards he'd see monkies on the window sill . Later there was a man with a hat in the bedroom and i would tell John to tell " HIM to go away. " and once he insisted we'd been somewhere and we hadn't. He didn' t behave like other dementia patients i'd seen on television or people id known. He slept, he was docile, sometimes he would get irritated with tablets but not often.

[Sandyism]

My mom had a bad fall 18 months ago. She fell back against a door frame and got a concussion and a small brain bleed, and she also broke two vertebrae in her neck. She had emergency surgery and was partially paralyzed, but gradually she got the use of her hands again and some strength in her legs but not enough to be able to walk without assistance. She's also extremely hard of hearing and has glaucoma and has lost vision in her right eye. She was moved to a rehab center, but, after having therapy for a few months, it became obvious that she would not be able to return to our home.

At first, when she would start to talk out of her head, we could pretty much guarantee that she had a uti. But over time, she began to have hallucinations, delusions, and delerium without having a uti. It's now reached the point that she has a period of 3-4 days when she's agitated and can't sleep. During this time, she thinks that she sees all the things that have been mentioned here. She also thinks that she's been on trips with some family members who have been deceased for many years. She remembers these visions in great detail, and she remembers them for days or weeks afterwards. These are quite often something awful like a car accident or somebody being after them. After this period of 3 or 4 days, she'll usually have a day when she just crashes and catches up on sleep, and then she'll have a day or two when she is only mildly confused. Then, the cycle starts over again. I try to go along with these to the extent that I can, but other times she's very insistent and tells me to do certain things that I can't do. She gets upset with me when I tell her that so and so isn't here.

I considered Lewy Body Dementia, but I heard that LBD came with Parkinson's. She doesn't have Parkinson's. Is there another type of dementia that acts like LBD but isn't, or can a person have LBD and NOT get Parkinson's?

[mainiotaainetta]

Yes, my dad had children sights at first and now he is scared to death by something he can't tell me beacause he's speech is gone. Sad that that this is so common disease.

[kimberlymarie]

My mother also doesn't know if im her real daughter or im the imposter of me . Same with my brother. She would ask me a question only her real daughter would know. Or she ask me to wear a bracelet she gave me, so she knows its me. One other time she called the police because she believed my brother and I was going to kill her . I thought oh my God are the police going to come knocking on my door ?! I called the police to tell them and they said they knew we weren't to blame . Police said they were familiar with my mother and because shes been calling the police regularly for awhile . She hears people telling her things. She has never shared her health diagnosis with us. The police told us she was diagnosed her with Parkensons disease. After watching this video of yours makes me think she might have the lewey body dementia. Ive stopped telling her what she thinks is going on is not going on. She sees things and has delusions of things going on. Like her grandson was breaking into her house and getting past her security system cameras by climbing through the heating duct work to get into her house to damage things in her house. 😢 Id tell her thats impossible, but she keeps believing that. She also would see a bunch of little children too . Theyd hid under her bed. Ive given up trying to tell her its not going on because theres no reasoning with her.
Its been very hard on everone . Another time she was getting married to her doctor when shes married to my dad . That story has gone away. Lately its been some bad people are going to burn down where shes at..its been going on for many years . Shes 77 now. She gets very defensive if we dont believe her stories and try to tell her its not really going on so she can relax and feel better, but theres no reasoning with her. So, we've stopped telling her its not happening at the doctors suggestion. Its been so been heartbreaking to watch for years. Ive heard it called "The long goodbye" indeed it is.
Oh and another thing i thought of is she's on alot of medications and i often wonder if its a side effect to one of her medications because its a common side effect, but shes takes alot and would be hard to figure out which one it is. My mother thinks there's nothing is wrong with her and her stories, she blames us because we don't believe her. Its been a hard journey for both her and my brother and me.
She's also went to the doctor so he could remove spider in her vien because she felt movement feeling in her arms. That was a few years ago and hasn't been brought up again. I often wonder what's being-sprayed-in our sky's with all the big X's in the sky that fans out into a hazy cloud.
I can't be good for anyone.

[FuzzyDoxie]

My sisters husband sees people on the ceiling and the ceiling fan all the time. I told my sister to tell him to ignore them that they’ll leave soon. It worked pretty good.

[brendaeterovic]

Is Lewy body damentia and Frontaltemporal damentia similar ? Delusions and hallucinations can be also present in both dementia patients?

[normaloeb]

Ann's beautiful mother Betsy passed away peacefully on January 1, 2023.

[johnkendal]

I was really shocked to see that I was hallucinating, especially whilst on the telephone with my sister, even more so when I heard my Buda speaking with him and her too about deep stuff !!

[lindawilkerson]

Are tactile hallucinations possible?, my LO feels things crawling on him, but nothing is on him

[holdonC]

I was wondering if there are auditory hallucinations? Hearing people say things when no one is there. Wait…. Just heard interviewed say her spouse started with auditory ones.