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He is suffering from Parkinson's Disease, has some seizure activity after a major accident, and now I believe could have Lewy Body Dementia. He believes that someone he went to high school with, he is now 68, is calling him and telling him people he cares about are dead. He is convinced people at the ALF he lives at are video taping and trying to kill him, and it is exhausting going back and forth. I am trying to get in contact with his doctors, but my dad does not understand that his behavior is not normal. I wish I knew how to help him.

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Are you his POA. And have you taken this to his doctor??? Hallucinations and delusions, yes, are often believed. My bro had early Lewy's and in that early stage, which he stayed in until his death, he knew his hallucinations were not real, and was able to discuss them with me fully. They were very intricate. A whole other world. He said to me "I am not glad to know where I am going, but I am glad to know why I am HERE, seeing things that others do not".
Again. Discuss this with the doctor, the neuro doc in charge of his case. There are medications that can help to limit hallucinations of Parkinsons now (they are new). One of the sad things is that when they work well, they sometimes affect balance, already an issue with this disease. So you are between the devil and the deep with whether to opt for less balance but also fewer delusions or more delusions but better balance.
Only a doctor can help you with this but I sure do wish you good luck.
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You're right. Lewy body dementia usually accompanies Parkinson's disease. Lewy body dementia is characterized by vivid hallucinations, mainly visual type.
Unfortunately, there is no cure for this dementia. Psychotropic medicines help to reduce hallucinations in schizophrenia, but not in Lewy dementia. They can make it worse, and sometimes they kill the patient, since they induce cerebro-vascular accidents. Any type of drug will make the dementia worse. It's better to use the minimum amount of medicines posible. Lewy body dementia advances more rapidly than Alzheimer's. Life expectancy is short.
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LoopyLoo Mar 2022
“Any type of drug will make the dementia worse.”

This is simply not true. Misconceptions like this are what prevent family members getting their elders the help they need. Mental suffering is just as important to treat as physical suffering.
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Has he been tested for a UTI?
This can sometimes be the reason the delusions are worse. Plus the UTI can be toxic.

The goal is not to convince him but to distract him. Watch some Teepa Snow videos to help you better understand how to respond to him.

My LO thought she had a device implanted in her teeth by the dentist that worked as some type of interception device. She would call the police to report the things she heard. She had auditory delusions. She wanted her teeth pulled to get the device out. so I get how upsetting this all can be.

You will only upset the two of you by trying to convince him he is wrong. Try to come up with some pat answers that soothe him for the moment.

Agree with him (validating his concerns) and divert his attention (help him think of something else)

(validating) I will speak to them about that dad.
And then immediately
(distracting) Would you like vanilla ice cream with sprinkles for your dessert or chocolate in a cone?
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It's probably time for your father to be in a memory care facility. Unless of course his ALF offers a higher level of care when a resident becomes in need of it. If they don't then he will have to go into memory care somewhere else.
You running yourself ragged going back and forth for his delusions is not helping anyone least of all him. Please stop doing that. You have to be strong because there will be a lot of work ahead getting your father situated in memory care.
Everyone here who is saying drugs won't help his dementia are right. What will help him in the short terms are drugs like Ativan (lorazepam) to calm him down if he's very worked up and agitated.
All you can do when he's having violent delusions is tell him that they are not true and that everything is fine.
Some delusions are fine to go along with so long as they are harmless. There was a resident in the AL I worked in years ago who was convinced that she was a German princess. We'd call her 'Your Highness' because it made her cooperative with taking her meds and we could our work done.
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Your father is not going to 'understand that his behavior is not normal'. Period. He is suffering from a dementia which prohibits him FROM understanding that his brain is broken. He needs meds to help him with this agitation and delusion, so please disregard people telling you otherwise. Imagine suffering as your dad is going, and being told, nope, sorry, meds will make you WORSE so suck it up, buttercup? Ridiculous.

My mother was suffering from advanced dementia & shaking all over, insisting her parents (dead for decades) were there in her Memory Care ALF but she just couldn't find them. Her hospice nurse called her NP who agreed that her Ativan needed to be increased; so within 30 minutes, that was accomplished and mom was calmed down and relaxed.

Your dad's ALF should be trying to get in touch with his doctor and expediting this matter FOR you; contact the nurse in charge and alert her to what's happening. Is dad in regular AL or Memory Care? According to your profile, dad is living in "Independent Living" which I sincerely hope is NOT the case or you will definitely have a hard time getting him immediate medical attention.


When dealing with dementia or dementia like behaviors, keep these tips in mind:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience

The Do's

· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment

Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently

Care Needs
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.

If you can go sit with your dad, that would be a good idea. Use the techniques mentioned above to deal with him until the doctor can prescribe meds to calm him.

Good luck!
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