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Is dementia a selective disease? for instance around most of this patience family there is a normalcy towards them and not the aggression that occurs between one of her children. This one has been the primary care giver since she was only recently diagnosed even though this has been a concern that she had this disease for years and she just again was diagnosed in the end of May with this now being in the late stages?

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dave15, "Show timing" is when the patient does everything they can to appear perfectly normal. A brief office visit, a short trip to the store, a phone call to relatives and they sound perfectly fine. That is why a hospitals do a psych eval over 72 hours. Nobody can keep it up for that long.
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What is "show timing" ?
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OMG SamLamW....sounds exactly like my father.
You wrote "The challenges I had was that the staff in ER's and other facilities aren't trained in dementia or neurology and would often not recognize the symptoms. They would just ask a couple of questions and then post "alert, aware of surroundings, etc." Then when I wasn't there - they would ask her things and accept her answers."
TWELVE hours after my father shattered his other hip this Mar 2015, yes, 12 hours!....the hospital doctor wrote about the same thing in his notes that my father was alert, verbal, aware....but when I walked into the hospital room, he could not tell me why he was there. He did not know he had broken his hip the night before...he thought he was in the hospital because he was short of breath due to asthma. But the doctor's visit that morning had my father down as just as normal as could be.....must have been in a rush, not cared, wasn't trained, I don't know. BUT the 2d doctor who came in the next day and spent some time examining my father and maybe had some ALZ/Dementia training wrote completely different notes to the effect that 'could not question Mr XXXX due to his inability to follow the questions and give clear answers to his current state of health'. Yep, I get copies of every single doctor or hospital visit including copies of x-rays, labs, etc, for our files on him.
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SamlamW, you explained this very well, quite common. Well said and explained.
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Oregongirl, yep :) The ALZ patient will ask seemingly innocent questions 'how is work, how is the family, how long did it take you to drive here, what have you been up to' things which helps them to maybe remember who this visitor is. This is all the ALZ patient asking questions, keeping the visitors from questioning them a lot of times. All normal conversation with most but a fishing expedition for an ALZ patient (I am guilty of the same line of questions when I had a customer, I recognized the face, couldn't remember their name thing). but to what the visitor sees is a normal, pleasant person, not someone no longer capable of making his/her own decisions or able to live alone. You said it very well.
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Most responses have talked about "showtiming" -- the deliberate effort to appear at their best for a short time. This absolutely does happen, and it can be frustrating for caregivers, to say the least.

But there is also true fluctuation in cognitive abilities. In Lewy Body Dementia that is one of the identifying features, and I believe it happens to a lesser extent in other kinds of dementia. My husband had good days and bad days, good hours and bad hours. He wasn't faking the bad times to get attention, and he wasn't show-timing the good times. There were actually fluctuations in how his brain was working.
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I think the caregiver sometimes gets the worst of it (or possibly the spouse, though my mom swears Dad is always kind to her, I know he has scared her before with his dementia-induced rages even when they weren't directed at her). It seems like the more I did for him, especially before they moved into AL and he wasn't consistent with taking his meds, the more he would find imaginary reasons to be angry with me. I wonder if the caregiver becomes a kind of proxy for the reason the caregiving is needed. He's angry at having Alzheimer's disease, but he can't rage at it, so he rages at me instead. The staff at the AL find him consistently sweet, and I know he's friendly and sociable with the other residents because I see it. With me he's either taciturn and formal, or quietly appreciative of whatever I'm doing for him in the moment I'm doing it (like fixing him a snack or putting away groceries, cleaning up the apartment, doing the dishes, etc.) but then when I'm not there, I become some other version of me that is bad and trying to do him wrong in some way (he usually imagines that I've stolen valuable things, but sometimes he imagines that I've taken his hat, his gloves, his eyeglasses, his hearing aid, etc. and calls me indignantly and says "I need you to bring back X, because I need that, and it's not right for you to take it away from me". I think deep down he knows that it's his memory that has "taken" these things away (because he can't find them) but he needs to blame a person, and I'm the easiest nearby target. Around other people he's a friendly, sociable, funny, kind person - the man I grew up with as my Dad. At least in that way I'm glad he's not "consistent"!
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They don't like their caregivers as much. And why? Because we are the ones who tell them to take their meds, their baths, etc.
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Wolflover, it made me stop for a minute when the Hospice nurse came in and said she didn't see where my father was ready for Hospice, trust me. After I talked to her for a while, then she agreed. Now...less than 4 months after he was signed up for Hospice care, she is one of the biggest advocates for his Hospice and ALZ care, lol. I also had 'before and after' pictures taken every month or so for the past few years and she saw a huge change in his appearance, facial expressions, etc. But first interview went exactly as I stated, it was odd that only an hour long conversation took place.
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I agree with all. My mom was a master at trying to hide her dementia. Unless you were around her everyday all day you would have never known she had a problem. That's why I tell everyone that when they take their loved ones in for an eval stay longer than 10 minutes that drs. usually give you. That's when the questions start over and over again or the same sentences OR answering with a laugh incorrectly because they don't understand what you are talking about. My mom has had hospice aide for about 1 1/2 years. She comes every morning to get her up and dressed, then the hospice nurse comes once or twice a week to take vitals and check on her. The rest of the time the aides and nurses at her facility take care of her and do a great job.
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The challenges I had was that the staff in ER's and other facilities aren't trained in dementia or neurology and would often not recognize the symptoms. They would just ask a couple of questions and then post "alert, aware of surroundings, etc." Then when I wasn't there - they would ask her things and accept her answers.
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Same thing with my dad. People who don't spend much time with him think he's doing great, including the GP. I took him last week to a clinic that specializes in diagnosing dementia. Obviously they "know the game", and it showed in the way the NP handled the initial interview. His score on their screening test was near the top of 'mildly impaired', but she commented to me afterwards that "he's really good at compensating" and not actually doing as well as the result suggests.

Gotta say it was SO NICE to have professionals see what I see, and agree that yes, we have a problem.
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My MIL does that too. When she goes to the neurologist she asks me where we're going and when I tell her she asks if it's the one who asks her all those questions. I say yes, then she'll ask me what the date is because he usually asks her that.
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This was frustrating for me. I expected the professionals to 'see through' the masking, but too often, they did not. She had one oncologist completely fooled.
Her cardiologist however, saw through it and wouldn't let her answer his questions with a question :) or an open-ended answer.

She had standard phrases that she'd use when talking to strangers. They didn't know she had been repeating the phrase to everyone.

And when we'd go to a doctor, she would ask me questions (repeatedly) while waiting in the exam room (ie) which doctor is this? why are we here? etc.. so that when the doctor came in, she could make remarks that indicated she was more lucid than she was.
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My MIL has Alzheimer's and recently broke her ankle. She had surgery and is in rehab right now. She'd probably get up and dance right now if they'd send her home today. Puts on a good show for the neurologist too, when I take her to see him. I have to remind myself that he's been in this business for years and can see through her. She tells him her memory is good and she's just doing great, etc.
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While my mom doesn't have dementia, she does a good job of hiding how sick she is. When the hospice team came to evaluate her this week ( to switch her from palliative care to hospice), she put on such a good show. I told the nurse and social worker "you're seeing her at her absolute best"- they smiled knowingly and said that is always the case.
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Look up "show timing" as it relates to dementia. What an education. And no, we can take comfort in knowing that we are not all crazy.
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Kara.... Well the nurse is coming today to do an evaluation on my Partner to see if he is a candidate for Hospice. The nurse over the weekend, was sure. But, we will see. I agree that the interviewer should know this behavior and try to get behind it and get the truth from the patient.
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Boy Annie...You are right on also.
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Pam, You are right on. I see him act SO different in front of company to the point he acts likes he recognizes the person. The minute we are alone, he relaxes and is into his world again. People probably wonder what the heck I am talking about when they leave and talk to each other. He seems fine to me (is probably what they say)
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i can't believe that a physc person would let the patient take the lead, how do they know then whether or not they have a problem, they should be doing memory quizes, etc. or maybe have a room with a 2-way mirror so that they can see when the patients family member are with them on how they are reacting,etc. that way they can see without asking bunches of questions. and yes the patient will take out their anger on a loved one, i guess that is normal
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Tran07. Absolutely. It is called 'cognitive masking' or 'social masking'. You can Google 'Alzheimer's cognitive or social masking' and gets lots of info on it. March 2015: When my father was being interviewed by the Hospice Nurse (he was 89) for possible Hospice care, she spent a full HOUR with him; she then came back into the interview room with me (his daughter) and the Hospice Social Director. Nurse said "I just spent an hour talking to Mr XXX in his room and I do NOT see any signs of late stage Alzheimer's or any evidence of poor physical health, I do not believe that he would require Hospice at this time.".
At age 88 my family doctor diagnosed my father with ALZ and multiple medical issues from labs, x-rays, testing. He had already fallen and broken a hip. he was in a wheelchair, but very mobile in it.
I had been taking care of my father for about 19 years at that time so I knew he had ALZ and had multiple health issues.
My father's regular doctor had been seeing my father every 3 months for about 20 years. He NEVER diagnosed ALZ or any medical problems.
He had been in another nursing home for 11 months, I had him moved to this new facility and a new doctor suggested my father would soon be needing Hospice Care. So this was not a new thing.
I then asked her what did they talk about, did he lead the conversation, was it general conversation, did he state zero pain or medical problems, etc.
She said 'yes, that is how the conversation went'.
I then said "how many 89 yr old men who were coal miners, hunted, fished, were very active their entire lives, broken hip less than a year ago, wheelchair bound, history of bed sores, etc., have zero medical problems or aches or pains?"
Pause to think about that one.
She recapped the conversation as him taking lead, asking HER questions.
This is an evasive mannerism of an ALZ patient. Keep the attention away from themselves, they want to lead the conversations and chats.
the primary care-given (family member for example) is the one who recognizes all behavior changes. Family and friends who rare visit see the 'normal side' of this patient. They think YOU are the crazy one since the patient has normal conversations, acts just fine around them. It is a defensive mannerism.
Most aggression will be directed toward the primary care-taker. Everyone else gets the pleasant person. However, once the ALZ gets to very late stages of this disease, the patient will most likely display their ALZ to everyone and can no longer mask it because they no longer have the abstract abilities (due to brain deterioration) to do so. Good luck with all of this.
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It was so frustratng when my husband appeared okay when his children visited and for a while when we went out to dinner with friends. But soon the friends noticed that the stories were oft-repeated old ones. His children only thought I was nuts! Each of these stages last for indeterminite amounts of time--and the next one is usually worse! Sorry. It is good to save the good memories and to let go of the bad behavior--as loong as you are safe from harm and so is he.
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My husband has vascular dementia, they can hide their shortcomings from people for a bit, enough so that they can fool people that do t see them often to thinking there is no problem. My husbands psychiatrist told me that Dave can fool people for a while....interesting the psych saw through him...lol. And yes, he can be very angry, aggressive with me at home when no one is around....also he can be so sweet and loving, I live for those moments and file them in my memory bank....
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I strongly agree about patients who try to hide the fact that they have dementia. I've seen this happen, And one of the most recent situations that I saw was when an elderly friend of mine was trying to hide an injury from a fall from his bed the night before. Any time any of his caregivers come around, he always tries to hide other things as well, I've also seen that happen. I also strongly agree that yes, they really do express the most anger toward people who are helping them the most because this is something that I also faced before I finally had to step away and watch this person fail. You can only do so much before you must let go and wash your hands of the situation. I had to do this because I learned that you just can't help someone who just doesn't want help. I know how it feels to have the best intentions possible only to face failure because you have to step away knowing that you could not make a difference in the life of another person. This can be especially hard when people are really set in their ways and you just can't change them from what I discovered. When someone is set in their ways, you just can't change that especially if they're used to doing things for themselves in an independent lifestyle. This is especially true if you lived alone for most of your adult life and never had a family. The longer you're alone, the more set in your ways you become to the point it's near impossible to change that as you get older. This is why older people are notorious for becoming cranky, and as another friend of mine once said, "cranks make the world go 'round" were his exact words. I'm sure he was joking when he said yes because you have to find a sense of humor sometime or life would just be downright miserable. When you're used to doing things for yourself, you tend to become very angry that anyone noticed your inability to do things for yourself.
I'm glad that not everyone loses their independence with age, I know someone who actually ran a farm well into his old age. He doing everything around the farm and he was still driving at that age. However, at some point his kids took the keys and will no longer let him drive just because of his age. This was for his safety despite the fact he had a clean driving record and was no threat on the road. It seems like at some point other people started taking over farm duties sometime around the time that he got a hospital bed. I'm not sure how long he lived after that, but he was mentally sharp just because he kept busy
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Dementia patients will attempt to hide deficits around people they don't see often, including family and MD's. Now on the other hand they can't hide their mistakes from primary caregiver, nor do they try, but they will spew anger at the very people who are doing the most to help them. At this point medications for anxiety or depression are very helpful. Don't assume the aggression indicates abuse, quite the contrary, the most anger is directed at the person they know will take it without lashing back. So strange, a real roller coaster.
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