Why does Mom manage to pass her cognitive tests?
Yesterday we went to the neurologists for the big appointment. He asked her the date (she just filled out forms where she had to write it down 3 times), the president, what town we were in, what county (she paused over that one) and to remember 3 items. Then he asked her to name all the animals she could think of in 1 minute. The minimum is 15 - she was able to come up with 16. Last time she came up with 30 something as I recall.
So he says that he doesn't think she has Alzheimers. That she might have some mild cognitive impairment. Mom was surprised.
Then I told him a couple stories about things she has done, said, or not remembered, like when she was talking about giving POA to my brother the lawyer to sell the house in Richmond when we moved back east. Except my brother was 13 then.
He then gave us a sample pack of Namenda to titrate onto. Mom reads the info pack on the way home, and it's for people with moderate to severe Alzheimers. First he says he doesn't think she has it, then gives her meds for moderate to severe Alzheimers???
Doctors know that these tests are suggestive but not definitive, and even with a diagnosis of MCI many doctors will try a dementia drug. If it works, awesome, if not, it can be discontinued.
Dementia is not like heart disease. There are no definitive tests or scans to tell absolutely what is happening in the brain. There are no clear-cut guidelines as to when a pacemaker or certain drugs should be suggested. Doctors have to to the best they can with what they know.
My primary doctor gave such a test to me, but my OCD was too busy wondering why the air conditioner in the exam room was making a funny noise :P Of course, I don't have dementia or Alzheimer's [yet] but there are days when my brain will take a detour..... my doctor says it's stress related.
I felt so sad about the phone...she made many, many, MANY annoying and inappropriate calls that I ALWAYS answered and tried to help and reassure...and though it was less of a hassle to so often figure out how to duck out of whatever I was doing at work to do that when they stopped, I hated what it meant for her. She would assume the phone or whatever didn't work, not that she could not remember how to dial, but that was it, you'd go check the phone and the errors were real obvious. And she didn't have the cognition to problem solve and ask someone to help her dial either.
I think the short tests are better for Alzheimer rather than other types of dementia. And at least you got the MCI (mild cognitive impairment) diagnosis and know to start preparing for things getting worse, which they probably - though not certainly - will do. It turns out Namenda does help with vascular dementia as well as with Alzheimer type and is probably worth a try.
Mom is pretty good at accepting what we tell her. She knows things aren't right with her, and she trusts us, so if we tell her that the phone isn't working because she's pushing the wrong buttons, she'll think about it a minute, then say, "Well, I guess that could be it", especially if she sees us able to get it working right away.
Mostly, she just wanted an explanation for WHY she couldn't do what she used to do. If it was dementia, she was ok with that. It was the uncertainty of not knowing that's bothering her. Mind you, she's been in Al-Anon for close to 50 years, so accepting the things you cannot change is built into Mom long term.
Regardless, a full neuropsychological workup is much more revealing than a mini-mental exam (or the slightly longer mini-mental status exam). My Dad took 4 hours of tests, and it was from the patterns revealed by his particular mistakes that the neuropsychologist determined initially that he was more likely suffering from frontotemporal dementia than from Alzheimer's. A year later, after Dad's cognitive abilities had slipped noticeably further, the neuropsychology clinic repeated this extensive testing, and after comparing the two tests, the doctor felt even more confident in her initial FTD diagnosis. She also said at that point that there would be no point in ever redoing testing of that level.
Despite this, however, Dad's long-term care insurance company insists on sending out a nurse to his home every 6 months or so to give him another mini-mental status exam, apparently to make sure he is not getting healthier and capable of caring for himself (which I find kind of ridiculous, given (1) that the visiting nurse is not a neuropsychologist, neurologist, or geriatrician, (2) that my father has been diagnosed and monitored over several years by a specialist in cognitive dysfunction, and (3) that his clinically diagnosed dementia is universally recognized by the medical community to be a progressive and irreversible condition). These insurance check-ins always worry me, because I fear that Dad will be having one of his occasional "good days" and test higher on them than his actual condition supports, and that the insurance company will use a good score to stop the benefits that he needs to pay for the visiting caregivers who come in to cook and provide other necessary home help.
The worst of these "visiting nurse insurance exams" took place in late December 2013, when Dad had been literally surrounded for a month by cues (holiday decorations, music, and cards everywhere) as to what month and season it was, and so had no trouble answering questions about those. (On subsequent insurance check-ins taking place in mid-spring and late summer, with no similar cues, he had no idea of month or time of year ... which is a much more accurate representation of his orientation to time.)
I have since learned that the mini-mental status exam has been shown to be particularly ineffective in gauging cognitive dysfunction in FTD patients, because most of the questions do not exercise the regions of the brain most affected by that particular disease. (Some FTD patients have actually achieved perfect scores on the MMSE even after progressed so far in the disease as to have to be confined to memory facilities because they can no longer safely live alone.) I gather that MMSE is a bit more reliable for Alzheimer's, but again ... good day? bad day? It makes a difference, and you can't predict.
So here's the thing. Your Mom may have a dementia other than Alzheimer's that allows her to score well on an MME or MMSE even though she is clearly demonstrating to you worrisome judgment and other cognitive issues. A full cognitive workup by a neuropsychologist (not a neurologist) would help to pinpoint what might be going on, but most dementias cannot be fully accurately diagnosed except post-mortem.
Second, about the drugs. JeanneGibbs is spot on, as always. Many doctors automatically prescribe the classic Alzheimer's drugs (or cocktail of drugs) when patients or their families express worries about possible dementia, memory issues, and so on, simply on the grounds that they MIGHT help, and that if they don't, they can be discontinued. I have been frustrated by my Dad's primary care provider repeatedly offering us Namenda and Aricept at his annual physicals because I knew from my own research that these drugs absolutely do not work for frontotemporal dementia. She seems to think that all dementias are essentially the same, and that "If there is dementia, it's worth a try." I didn't agree. These drugs are expensive. They can have some serious side effects. My Dad did not want to take them. Even from the outset, he was not in a position to medicate himself safely, and he wanted (and wants) to continue to live at home as long as possible. All of these factors added up to making the drugs not a good option for us. The neuropsychologist completely agreed with and supported this decision.
This being said, in the absence of physical and/or neuropsychological tests to try to pinpoint other causes of your mother's cognitive/memory/judgment issues that Aricept and/or Namenda are unlikely to help -- i.e., nutritional imbalances, urinary tract infections, FTD, etc. -- you can decide to start her on one or both and see if things improve slightly or at least stop getting worse. See if she experiences negative side effects, and decide whether any apparent benefits outweigh the side effects.
On a side note, I think it is interesting that your mother is AWARE that there is something wrong at a point where she is having problems that are noticeable to you. My Dad showed a completely characteristic (for FTD; I don't know about Alzheimer's) lack of insight that there was any problem at all. Ten minutes after the doctor gave us the diagnosis and explained what we could expect over time, he could not remember even that he had a condition, and just thought that his memory is worse than it used to be, and that one of his doctors took away his driver's license for no good reason.
Some days, when we have an appointment (we keep a calendar in a central location where she goes past it all the time), she'll ask me 5 or 6 times what time the appointment is within the space of an hour or so. On occassion, if we're running late at all, she'll get stressed to the point that we have to cancel at the last minute, because she starts shaking so bad. Once we cancel and she lays down, she feels better.
I will check with her insurance and see if there are any neuropsychologists available. She's on a medicare advantage plan through aetna. Thanks for all your help.
My Mom also has dementia and before she was diagnosed I kept telling her doctor that there was a real problem with her memory and judgment. He kept putting me off with "she seems fine" (how he could tell much in a 15 minute office visit is beyond me). Anyway, one day Mom unexpectedly took off in her car and fortunately was stopped by the state police driving the wrong way on the freeway. She was confused and had no idea where she was heading. Thank goodness no one was hurt. Mom surrendered her license the next day and hasn't driven since. I took her into the docs that week to be sure we weren't looking at a correctible problem and it was only after I told him about the driving incident that he took me seriously. Did his little cognitive test and started her on Aricept after her labs came back negative. Taught me not to count on docs. That it is very hard for them (unless they are willing to listen to family) to help with dementia pts especially in the early stages. They can often be fooled in their hurried 15 minute office visit.
Put all those factors together and you have the root cause for all those prescriptions for Nameda and Aricept.
What does the an elderly person say when they go for a check-up after a few months on the drug and the doctor asks "do you feel it's helping?" Of course they say "yes."
In my non-professional opinion, Namenda and Aricept do nothing but cause diarrhea! And, that's not the only negative side effect. They are powerful drugs and shouldn't be prescribed because they "might help."
What do I see now after a week? I know it's early, and Mom is still titrating on, but I'm not having to remind her to take her pills and then write them down. She's doing it on her own. She's not getting that blank look on her face. Last night when I went to check to see if she'd taken them before bed (she likes to read in bed) she looked up at me to say to goodnight, and she looked just like my Mom of a few years ago - happy, bright, and ALL THERE.
As far as diarrhea goes, that hasn't happened. Mom suffers from chronic constipation, and one of the warnings on the label was constipation. She groaned about that - like she needs more. If diarrhea is a side effect - bring it on - she'd welcome it!
When I first visited the AL and saw the memory care unit, I was appalled and thought how terrible it must be for the families to have a loved one in that condition. Six months later, I realized with a jolt--no, they have it much easier. It is clear that they have to take over. No one can argue about it.
I would be cautious with the memory drugs. A doctor took them as a test and said he had to quit them due to the nasty side effects. He now hesitates to prescribe them because his patients cannot articulate side effects. They also said that after 3 years those who took them were no better off than those who didn't. Wishing the best for you and your mom as you go through this difficult time.
My primary comment has to do with Namenda. 15 months later it has made a world of difference with few noticeable side effects. She can again use the phone, TV remote, prepare some food and clean it up, totally engage in meaningful conversations and more. She's just as stubborn and manipulative as ever as it also restored some bad behaviors, but she is much more often "with it" as a result. Power of suggestion or real benefit, who knows? I'm thankful and would suggest trying it as you have. More good time for our loved one makes it worth it even if we know the plateaus and decline are inevitable. Hugs.
They need to ask more process-oriented questions, like, how do you get your money? How are your bills paid? How do you get cash when you need it?
My mom had no idea where to get cash and insisted that she didn't receive money every month. She had no idea what was going on or how she was living. She was incompetent to live on her own or handle her affairs. But she didn't do badly on the silly tests.
My heart goes out to people trying to figure this all out. Hugs!
My mom was well into her alz and still passed the 'draw the clock' test and mini-mental. Also, she could still smell which 'they' say goes first!
They changed the test recently to be pointing at objects and asking her what they were and other things like that that were more helpful in diagnosis... and an MRI showing the plaques.