Behavior and mood symptoms in Lewy body dementia

Presented by Jennifer Merrilees, RN, PhD, a nurse at the UCSF Memory and Aging Center as part of the Lewy Body Dementia Caregiver Webinar Series supported by the UCSF Memory and Aging Center and the Administration for Community Living.

[@bruceparr1678]

My 87 year old dad was running around the paddock in the middle of the night. We would be chasing him but by sunrise he would be covered in cuts and grazes. Everry time we fell asleep he would get up and go outside.

[@marvinmanson7923]

Thank you...My dad has dementia...This helps me to understand his condition...I tried it alone and it didn't work well at all, so I had to put my dad in a nursing home...This condition of dementia is a heart breaker...😪

[@jillybe1873]

It is impossible to care properly for a dementia patient at home. It's 24/7. We took turns with Dad and changed shifts as he decided the one who was there was trying to poison him or stealing from him! Eventually he went to a home and was much happier and trusted the carers completely. From trying to cope for mum and then dad, I am now convinced that a nursing home becomes necessary and is a good choice.

[@L.J.H.-sg6eb]

Your story hits my heart strings. My Momwho is 75 was just diagnosed with Lewy Body dementia. It is hard for me to handle this on my own. I work from home but as a customer service agent my Mom thinks I am talking to her. We have lived together for 9 years now. She started declining 5 years ago. Justheavy some days, but I too am looking at memory care or a nursing home. I need the help. 😢❤

[@theislandrobinsons]

I lost my dad shortly after his diagnosis. He had severe delirium and a UTI which aggravated his condition. Thank you to all who do important work with DLB.

[@anngrimm6599]

I am Sally's sister, and I have also benefited immensely from Careblazers, both in having a common ground with my sister, but also in caring for my mother-in-law for a number of years. Sally mentions the need for support for the caregiver, and it cannot be emphasized strongly enough how important this is. Loving siblings are wonderful, but the caregiver also needs people who share, and therefore deeply understand, their daily struggles. Sally was fortunate in finding a group of caregivers online.

[@kimber5566]

And Teepa snow is great!! Lots of vids and training on line and people to call

[@JohnDaker_singer]

My mother was recently diagnosed, but has been having many of the symptoms for the last 2 years. She hallucinates, becomes irritable and verbally combative, and even has become an overt racist. I feel very bad for her caregivers, as many of them are People of Color.

[@jillybe1873]

I expect they're used to it. My mum went from being a campaigner all her life to a nasty racist overnight. The nurses ignored her remarks.

[@pa1154]

So you don't care for her

[@wendypetersen7529]

Communication may be a key ingredient, but my father is profoundly deaf and can no longer hear anything I say, plus he is severely visually impaired, so he also doesn't get the visual cues from speech. If I try talking more loudly so he can hear me, he thinks I'm shouting at him and gets really nasty. These days all I can do is shake and nod my head, or try and play charades to get him to understand. He absolutely refuses to go to the Dr. and get his ears cleaned, refusing to get out of the car. Plus he is absolutely sure nothing is wrong, that he doesn't have hallucinations or delusions and it's exhausting. We are a small town, and there are no support groups or day centers, plus as there's "nothing wrong" with him, he would absolutely refuse to go to one. I'm slowly drowning.

[@lynnmacdonald61]

I feel so sorry for you sweetie I hope you find what you're seeking sending prayers

[@karami8844]

Doctors really need to become more aware of this disease, especially neurologists. My dad was diagnosed with Parkinson’s disease and two years later, with dementia. His hallucinations started early on with PD symptoms but his neurologist thought it was the carbidopa/levodopa medication being too high, so he kept adjusting it. My dad had all of the symptoms listed here.

[@americana1234]

same here

[@JaneDoe-pr1bl]

My parent as well.

[@whereslaska]

I'm 63 and am convinced that I have early early Lewy Body symptoms. My Grandmother, Mother, and Aunt all died with dementia (never specifically diagnosed) but I was a caregiver for both my Grandma and Mom... I KNOW it is LBD. My mom told me she thought she was getting it at my age and I denied her reality. I'm still here... but I'm fading.

[@pranavgaikwad5535]

Plzz belive in Jesus he is the only real god and he can heal you and i am not doing this for relegious sake because jesus came for whole world and he is real God he loves you plzz prayer to him he will heal you i have experienced even I am just 17 and i was having ocd disease he healed me trust jesus and i can help you trough prayer if you want

[@pghbekka]

Sending you love on this difficult journey! If you haven't, I do recommend you pursue the diagnosis. The earlier you know it, the more effective medication can be (we know it is terminal but some medications can slow the progression a good deal, and sometimes reverse some affects for a time). Also, having it on your record can be imperative as your reactions to medications as a person with Lewy Body can be very different. It sounds trite, but keeping active can help you maintain as well. Again, sending you so much love and sympathy!

[@innersting3174]

I was just diagnosed with lbd and am holding you in my heart. (I am much older, 74)

[@yvonnesmith2335]

My husband has been diagnosed with VD, I also believe that he has LB but was told there is no way of diagnosing a living person with LB. The only way to tell is by autopsy. What is the test they do before death to diagnosis LBD.

[@thejurydoctor6097]

@@yvonnesmith2335 Single-photon emission computerized tomography (SPECT) or PET imaging. These tests can show reduced dopamine transporter uptake in the brain.

[@brendadimaggio4159]

Extremely educational and helpful. Thank you so much for your time to this cause.

[@paulohlsson27]

Hi Brenda, how's your day going with you?

[@777Rowen]

When she showed the image with the landscape I saw the face of an old man with his eyes closed. Very informative video.

[@PINKTOES5150]

Every time I get on the phone she rushes into the room and asks why I’m talking about her .

[@islandbirdw]

Recently I’ve been following a young couple who are in their late 40’s and the young man has developed LBD. He described an interesting sensation that occurs when he get so fatigued he just “zones out” he feels it start near the frontal cortex and then moved up and over his head. He then withdraws and takes a nap. He doesn’t sleep well at night also. His wife and childhood sweetheart is a nurse and so she has had to quit working to take care of him full time. Neither of them are even 50!

[@bakokat6982]

Thank you for this information.

[@marialock007]

Studying dementia and prevention, this presentation was really interesting. Thanks for the information.

[@ostomate209]

Look to Dean Ornish dementia studies

[@paulohlsson27]

Hi Maria, how's your day going with you?

[@americana1234]

never diagnosed til near death, drs are uneducated in LBD

[@103964988]

Thank you this is extremely helpful

[@dewiialjoe711]

I really enjoy this video very helpful and very detailed information

[@christinetourigny5038]

My dad had Lewy bodies.. anti psychotic medications were "counter indicated". Made things worst more agressive more anxious. The specialist in dlb stopped the anti psychotic medication has they work opposite on dlb patient. It became manageable once anti psychotic medicament were forbitten for him. They adopedd another strategy and he never had another episode of agressivity after that.

[@iamlegend6676]

What strategy/treatment was effective?

[@JaneDoe-pr1bl]

Yes, I’d like to know this as well please.

[@barbarahuttmann8055]

In the last two weeks of Lewy, my husband was helped alot by Seoquel, to sooth his anxiety and constant need to move about

[@paulohlsson27]

Hi Barbara, how's your day going with you?

[@kristinamullen4066]

Thank you for this info.I'm trying to learn more about this because I'm working with a few patients who have lewy body dementia.I want to learn the best way to handle their difficult behaviors, such as paranoid delusions and accusations.

[@mayhemgaming8798]

Can you tell me some instruction ? my dad has lewy body dementia and he is in a level who only can move his eyes and face and some days his arms and his legs... is there any new update to fix this disease?

[@passinthru4788]

With all due respect, I take issue with some of this Lady’s assessment of symptoms indicating presence of Lewy body dementia, as many see images in clouds and trees, even mountains and rocks. There is a name for the phenomenon, and it is not Lewy body dementia. Folks hear noises and such, without explanation, many folk at the same time hearing loud booms or crashes, and are well adapted people not having dementia. Although the events are also present in dementia patients, there is some very strange phenomenon occurring. I also believe there is a correlation with covert and overt narcissism connected with developing LBD as many folk exhibit symptoms of all 3 at times. However, I thank the Lady for her time and effort in creating this presentation.

[@Felix2001G]

My dad was diagnosed with Lewy bodies in November 2019. I am terrified to see how this progresses...

[@MissZooid]

how is he doing ?

[@Felix2001G]

@@MissZooid He's ok. I am definitely seeing changes in him. It's upsetting. Thank you, for asking.

[@pa1154]

​@@Felix2001G hey. How's he now

[@loisshukes8842]

Please watch Stanford APDA 3 Dementia Lewy Bodies Atypical Parkinsonism.

[@janelewis7747]

My mom has this, she is very cruel to me, not to my sister? Is this part of the diagnosis?

[@kiloton1920]

Yes this seems to be an early sign, along with falling. Your sister most likely sucks up to her so that’s why she is nicer to her.

[@pghbekka]

Yes, it can be. Many times, the aggression and paranoia targets the person who gives the most care, unfortunately. It can also fluctuate as to who is considered the bad person. If it helps at all, if this is new behavior, it is not really how your mother feels. She is frustrated and scared and can't put her fear into words or understand completely what is happening, so she targets an outside cause.

[@pa1154]

Yes my mother got diagnosed with this disease 5 months ago and she hates my brother but likes me as a caregiver. Be kind to her. She's just showing symptoms

[@cindylee7855]

HELP!!! Can someone with ALL THESE HORRIBLE SYMPTOMS have days where they seem quite normal then go back to sleep disturbances and seeing people???

[@redtrinitygirl]

MY mom seems to be doing this.. she had about 10 months with mostly good days now she is just napping and has locked me out of her house. she don;t know who I am when I'm knocking on the door..

[@leticiaurbach6817]

How long does a person with LBD lives?

[@jeannewagenaar8448]

it's a little bit sad, that this video is not in the Dutch language. My husband has LBD and i understand not everything of this video.

[@paulohlsson27]

Hi Jeanne, how's your day going with you?

[@pmfg875]

Press the cc symbol in the upper right corner of the video, then choose auto translate. Can also use a phone app to translate the sound. All the best.

[@gracierenteria6931]

I really want to understand more of this disease but I can't get myself to watch over 40 minutes of this lady taking, like she's reading to put people asleep

[@fearsomefan1]

Playback at 1.5x speed. Way better. 0.75x is also very useful where the speaker is talking too fast to understand.

[@meman6964]

Two voices , taking turns, helped me stay focused . Thanks

[@debbypatterson5178]

Miami mother just died of Lewy Body syndrome and we were never given any information we just knew that she had some Parkinson's symptoms and someday would show signs of dementia You have no idea how I wish information

[@PINKTOES5150]

I might add that she just turned 22 in September.

[@cindyroofe4813]

My mother won't get out of bed, she's been in bed for over a year, is that normal for her?

[@BoysLikeMeee]

No, it's not "normal" to not get out of bed.

[@latoyacollins1442]

It might b normal for ur mother every person is different

[@barbmendenhall2093]

😂