My mother had to be taken to the emergency room this past weekend due to fecal impaction, and was successfully treated and released back to the nursing home. Upon her release the ambulance personnel told me that her paperwork from the hospital indicated Alzheimer's. However, one of the nurses at the nursing home, who has worked there for a few years, pointed out to the ambulance workers that my mother knows who she is, recognizes other people, and but has lost her short-term memory and has changed very little over the course of a few years. From everything I've seen it would appear my mother has vascular dementia, including the fact she has had a few TIAs in the past. This nurse made the comment that she thinks hospital personnel tend to assume any dementia is Alzheimer's, while she has the training and experience to recognize the differences among kinds of dementia and has known my mother over the course of a few years. A large part of her concern (and mine, too) is that an incorrect "label" can get into someone's records and perhaps cause problems later. (I can think of three times in which something incorrect appeared in my own records due to carelessness or assumptions made by others.)
That is a very dangerous doctor, typing in what you say. This info goes on the pt.'s information, for other doctors to see. It has been my experience, that a doctor who does this can do real damage to your medical history. Not even a good psychiatrist types in everything you say!
Decide ahead of time to be silent until he faces you, asks a question. Then stop talking when you have answered in one or two sentences. Rinse, repeat.
Get a new doctor.
You're right. Thank God for the Internet!
Two summers ago I was having a rough time with anxiety and depression. Went to see a therapist who shoved me off to a psychiatrist. (Found out later her schedule was full for 5 months!) The psych listened for a few minutes and recommended two medications. I got home and looked them up. Holy Moly! This junk was harder to come off of than heroin! Also horrible side effects. I went back, armed with printed info from the net and said, "Are you aware of these side effects? Also, all these law suits for this drug? Sorry doc, I'm not THAT sick."
Patient heal thyself.
I think every doc needs to try whatever he is prescribing before he gets to prescribe it.
This could have been a paramedic feeling proud of himself for reading between lines, or it could have been a junior ER team member playing fast-and-loose with the patient's history. I wouldn't pick the battle unless it mattered, just keep as close an eye as possible on any records that are being used for practical purposes.
You should also remember that as caregivers we have an advantage over that much larger population which has not yet seen dementia up close and personal. When the Alzheimers Society says "when you've seen one person with dementia, you've seen one person with dementia" we understand what they're getting at. To the uninitiated, when they've been to one seminar on Alzheimers Disease they think they've seen it all.
As a result regular people don’t even think of dementia or Alzheimer’s when trying to better understand and treat their parents, grandparents or themselves! It’s a taboo subject and almost a shame to say that an elderly might be suffering from dementia as it is equated and reduced to someone simply being crazy.
For example, I know that my mom has some degree of mental health decline, yet have no details. I know she suffers from narcissism but just because I have educated myself about it and because living in the US I’ve gathered information that being here I wouldn’t have thought of accessing.
When it comes to relatives (I’m an only child) I would not dream to see them understanding that many of my mother’s actions or reactions are the result of mental health decline, whatever that’d be labeled as. Because they’d just gossip about my mother being crazy. They’d never think of helping, just labeling her situation completely incorrectly. That isolates her, and me, even more.
Yet, when it comes to the lack of information or doctors specializing in geriatric matters here, sometimes I see it as a good thing. Because while in the US there’s abundance of knowledge combined with ignorance about this, here people just feel they owe kindness to their elderly, not having preconceived notions about them or their illnesses, specially mental ones, as they are “just old”. They live at home with their families and for most people (not my case) it’s easier and cheaper to hire help to care for them. It actually can be a better path for the elderly and their relatives. It all depends on the specific situation, as everything in life.
Sorry, I know my comments are a little off topic but even though I'm communicating with you nice people on a computer sometimes I think it would be nice if we could go back to the old days for a while.
Perhaps the specific diagnosis isn't so important (then again, it can be very important for the prognosis), but being a scientist I just get irritated at "semi-gluteal" off-the-cuff assumptions.
If a specific diagnosis is important, perhaps you should pursue more testing with a neurologist so that they can label it properly
Mom always looked confuse to people meeting her for the first time. She would be asked a question and if Mom was able to pick out one word from the question then she would talk about it. But usually she wasn't answering the question the medical personnel wanted. I had to be her interpreter.
Dad was in the ER numerous times due to falls. One time the ER Dad was telling the nurse that it was a long drive back home, would take a couple of days [we both lived just 15 mins from the hospital]. The nurse was very concerned and thought Dad might have a head injury so we wanted to run more tests.... until I told her "at 4pm Dad thinks he lives in Iowa" [we lived in the Wash DC burbs]. Then the ER nurse understood :)
Thank Heavens we've progressed since those days. At least we know the differences in dementias and can treat each one individually. We have improved diagnostic methods but I believe we are still in the Stone Age for treatment and prevention. At least the problem is out in the open and has the attention of the government and researchers. We're a long way from eradicating the disease. Hopefully millions more federal and private dollars will be funded and spent to save future generations from this devistating family disease, not to mention saving the government billions or trillions of dollars in taking care of millions of us demented old timers. It is in the fiscal best interest of the government to find a cure/prevention so they can use that huge sum of money in other places.
I have a shred of hope that this progress will help us and our kids and all future generations be spared the fate that befell my grandfather and mother.
People without specific training make all kinds of assumptions about dementia behavior. When Coy was admitted to a hospital his nurse looked at his chart and said to me, "Oh! Lewy Body! That's the one where they are violent, isn't it?" I agreed that people with LBD could have violent behavior, and that people with any kind of dementia could be violent, although most weren't. Coy was not violent. At the end of his five-day stay this nurse sought me out. "I am so glad I've been Coy's nurse. He is a sweetheart and I learned that you can't predict someone's behavior by seeing their diagnosis!"
Some people are unable to care for themselves in their 20's (I have a neighbor who is FINE, except she is completely incapable of taking care of herself. Doesn't want to and doesn't bother to try to learn. Completely dependent on her hubby to do EVERYTHING for her. She honestly won't even take a shower unless he writes her a "to do" note to do so.) I know 90+ yo's who are still globetrotting (my 94 yo uncle and his wife take one long cruise per year--and I mean they go for a month or more)....completely "with it".
I wouldn't take what some ER nurse said as being gospel. If you're anxious about a LO, have them evaluated and go from there. I would put a lot more faith in the word of someone who KNOWS your LO on a daily basis.
Dementia is dementia whatever the cause and carries with it certain dangers such as memory loss, wandering, forgetting to eat etc. If you are very concerned then a formal evaluation and diagnosis from a geriatric psychiatrist would be in order.
I agree that incorrect information does get into medical records for whatever reason and of course should be corrected.
It is frequently the result of ignorance and lack of instruction. The dementias are only recently getting the attention they deserve. 50 years ago all elders with cognative problems were simply labeled as "senile.
Even these days at 78 my ability to understand my condition and participate in treatment options seems to come as a surprise to many! They were surprised to see me sitting up in my hospital bed happily typing on my computer.