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Top specialist and extensive testing by the Mayo Clinic diagnosed her in the past and ruled out Alzheimer’s. I know it doesn’t make any difference in her care but it bothers me that this was carelessly added to her list of diagnoses. I am certain no one tested or assessed her to come up with this. Is this a common thing in nursing homes to label all dementias carelessly or for paperwork reasons? It truly won’t change her care but my family spent years seeing specialists and seeking diagnosis and this is not correct.

Should you care? If I were you, I would go absolutely ballistic.

Where did you see the reference to Alzheimer's Disease? - on what bit of paper, I mean.

And whose signature is on the document? Because if you were me, that person would find you in his or her office at the earliest opportunity, having a complete sense of humour failure and demanding an explanation.

In the absence of a satisfactory explanation, it is formal complaint time. Medical records MUST be accurate and complete or they become worthless.
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jacobsonbob Mar 2, 2020
"sense of humour failure"--I love it! Thanks, CM!
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The nursing home staff have no idea of the complexity of a dementia diagnosis nor the different treatments. They can barely pronounce the names of the medications. You might want to engage in a conversation with the nurse caring for your family. A Nursing or Medical education does not make you an expert in dementia care. Experience is the best teacher. The best you can do is advocate for your family member. A CNA may recognize the diagnosis of Alzheimer's but would have no idea what Lewy Body Dementia is. The legal staffing ratios for skilled facilities are less than ideal. Getting involved politically may be the best way for you to advocate. Also, get to know the staff day and night staff, a relationship with the staff will help everything. Suddenly, your family member is more than the lady in room 101 with dementia. My husband is 48 years old with early onset dementia. Frontotemporal dementia is the current working diagnosis. Dementia by any name is not fun, not fun at all. Blessings.
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I'd bring it to the staff's attention. I agree that it probably won't impact treatment decisions but I'd let them know that you are watching the file for accuracy. I'm sure they want the file to be accurate too. Hopefully, they will investigate how that diagnosis appeared on the file.
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It is possible to have more than 1 type of dementia.
The VERY important thing with your mom is that they still have the diagnosis of Lewy Body Dementia.
There are medications that can be given to people with other forms of dementia but they can be FATAL if given to someone with Lewy Body Dementia.
Unfortunately people seem to use Alzheimer's as they would the term Dementia. (I think many people do not realize there are many types of dementia, Alzheimer's seems to get the most "attention".)
I would make sure to review the medications that are being given and they should notify you of ANY change in medication.
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Dollie1974 Feb 29, 2020
So true...my mom was diagnosed with Vascular Dementia and right away the Neurologist wanted to prescribe Aricept along with other meds and I said no, after a long research on them, they do nothing for Vascular Dementia and may even cause very bad side effects instead. My mother’s Brian injury came from ischemic strokes, only those parts of the brain where the stroke happened is affected and can never be reversed...vision loss, judgment & reasoning, no cure for it. Just need to try and prevent further blood clots (strokes) so that her condition doesn’t worsen.
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I would certainly ask about it but I wouldn't go to war - who made that diagnosis and based on what? Although it likely wouldn't make any difference to her care the diagnosis that will ultimately be written on her death certificate will become part of the statistics on which both government and research funding are based.
I was appalled at how little many the people who worked with the elderly every day seemed to know about dementia, right up the ladder to RNs as well as administrative staff. Many of the senior staff were older and still clinging to information and techniques that they had learned 30 years previously and the worst part is that they didn't appear to be open to learning new anything either, more than once I was made to feel like a hysterical amateur full of doubtful hypotheses gleaned from the internet 😬.
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NYDaughterInLaw Feb 27, 2020
That certainly is true, cwillie. The amount of ignorance about dementia and geriatrics in general is appalling. For example, too many doctors and nurses either have forgotten or never learned that drugs are NOT tested on patients older than 65. Old people are not just older adults. Adjusting for weight and BMI is not enough. I too have been given the "you're a hysterical amateur" looks, and I just hold firm and keep repeating myself until someone addresses my underlying concern. We have to advocate for ourselves and our loved ones.
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Chrissy,

Earlier I posted an addy about an article I read. Lewy Body is one Dementia that they have to be careful what meds are given. Some are deadly. If the addy I posted previously doesn't work the article was...The death of Robin Williams: nine things to know about Lewy Body Dementia.

As a Nurse you probably do scare them. My daughter, as an LPN and an RN, worked in rehab/LTC facilities for 20 years. I loved when staff was trying to intimidate me and then my daughter walked in with her scrubs on. Boy did those attitudes change. My Mom had done a 180 in the hospital and they wanted to release her to rehab. I got an extra day but it was my daughter who found the antibiotic had penicillin in it that hospital records showed she was allergic to. My Dad was in rehab. Mom mentioned that he had blisters on his heel. My daughter looked at them and found dead tissue. Read the chart, he was brought in with pressure points and not given an air mattress. She went right to the DON. I really think she saved her grandparents life.
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whaleyf Mar 2, 2020
Thanks for the info about Robin Williams. I had a friend die from it and didn't realize he could die from Parkinson.
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It should be corrected. Lewy's manifests much much differently from Alzheimer's Dementia. You should now meet with the director of the facility and calmly sit with your proof and with your questions. "Who added Alzheimer's Dementia to my Mom's diagnosis, and when." "Do you understand the difference between the various types of Dementia?" The truth is that, until it hit my own family (my bro has early Lewy's), I, even with a medical background, but retired 15 years, didn't know how unique the presentations of different types of dementia are. Even the expected progression differs markedly, with Lewy's having a sort of jagged up and down progression, and Alzheimer's have a certain slow downward tragectory; others go in sort of stair steps. Many of us here get our educations because it is FORCED upon us by what we are dealing with. THAT SAID, a place that deals with elders suffering from these conditions should/MUST know all they can in order to provide the unique care these conditions can demand.
You can help. You can help their recognition that not everyone fits the cookie cutter forms. Please do so. Do it calmly and with love.
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I’ve noticed that some very skilled professionals who deal with geriatric clients do use the terms “Alzheimer’s” and “dementia” interchangeably.

Since the period of time in your mom’s life has passed during which differential diagnosis would have mattered, wouldn’t it just be more work for you to question this or attempt to have it changed?

That said, if the question were asked casually and non-defensively, you might feel better if you were given a reasonable answer.
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The diagnosis may not have been correct during those years; however, things probably changed and the diagnosis may be correct now. There is not one straightforward way to diagnose Alzheimer's. It's a combination of neuro imaging, mental status testing and interviews with those who can speak to your mother's current and previous functioning. Even Mayo Clinic experts state that there's not a one size fits all approach to diagnosing Alzheimer's.
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Invisible Mar 2, 2020
Autopsy.
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I am not convinced that the doctors know much of anything about Dementia, they talk in circles, with no conclusions. I wouldn't give this a second thought, whatever it is called doesn't make any difference, there is no cure!
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JoAnn29 Feb 28, 2020
Yes it does make a difference. See what I wrote previously. Read the article. I thought the same thing. A person suffering from Lewy Body cannot be given certain meds. It will kill them. So it "is" important that the right Dementia is diagnosed.
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