How to tell if it's dementia if all her tests say she's "normal"?

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My 80 yo mother shows plenty of signs of having dementia: she is forgetful, gets confused, asks the same questions over and over, gets obsessive over things so will repeatedly call people and call her bank to check her balance, still insists on driving and will head out to a destination and then realize she's not where she intended, and loses her car when she parks in a large parking lot like WalMart; and at times appears to hallucinate- thinks she's with people when she's not or seeing people who have passed. I contacted her primary doctor and finally they got her in to see a neurologist. I'd been trying for some time to get her to one but she always came up with excuses not to go. The neurologist did an MRI and an EEG and the results have come back as "normal", although the doctor says she has "mild cognitive impairment." So she thinks she's fine and of course continues to drive. Her mother, her grandmother, and great grandmother all had dementia, but she also has psychiatric issues. So if all her tests say she's "normal", are all these behaviors from her psychiatric issues? Thanks for any insight given!

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The tests did not say she is "normal." The most they can show is that she has no obvious signs of dementia in her brain. MANY brain defects associated with dementia are not obvious on MRI or EEG. Really. And MCI is not a "normal" condition of aging. It is a problem in the brain. It may or may not be early stage dementia. (Not all cases go on to dementia.)

By her behavior, Mom demonstrates that she has something more than normal aging going on. You are going to have to deal with the symptoms you see, whether you have a label for them or not. I'd start with the driving problem. That puts other people's lives at risk. Contact the DMV, explain that Mom has MCI and that you believe her driving is unsafe. She will probably have to take a test to retain her license.

Look up advice on how to deal with dementia symptoms, and/or ask about specific symptoms on this board. For example, no matter what label we give her, Mom has hallucinations, and it is good for caregivers to have advice on how to react to these.

If you want a second medical opinion, I suggest you find a geriatric psychiatrist. Not that psychiatrists are better than neurologists at this kind of diagnosis, but they do come at it with a slightly different approach.

Is your mother being treated for her psychiatric issues? What kind of a doctor is following that?
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Reply to jeannegibbs
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Here's my take on dementia. Your mother sounds like my mother. It seems like if it's not something obvious like Alzheimer's, doctors are reluctant to diagnose dementia. We recently took my mother to a gerontologist because she's got classic signs of dementia. Wrote out a list of symptoms that include thinking the carpet is wet when it's not; intermittently not knowing where she is even when she's in familiar surroundings. They gave her a test. She nailed her birthday but didn't know the date, couldn't recall the name of the president, but all they would do is say they'll schedule her for a brain scan.

Alot of times we know our own parents alot better than the doctors. So, trust your gut.
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Reply to rwbpiano
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Sometimes medications which have side effects such as hallucinations or confusion. You could talk to the pharmacist about medication side effects.

You could ask for a second opinion. Instead of taking a doctors advice on who to go to, if you know some nurses ask them because they usually know who's a good.
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Reply to tacy022
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Aside from the tests for physical evidence such as MRIs there are detailed cognitive tests that are often administered by a gerontologist or a geriatric psychiatrist.
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I’m an “old guy” , (79), blessed with good genes and havenyhiy the “memory walk” yet, but I care for my wife whom was diagnosed with Alzheimer’s (8) years ago. I have what I call “practical” comments.
By the way, most or even all of the comments about this problem are intelligent, sometimes too much so.
At your Mom’s age, I would suggest breaking things down to the basics.
1) UTI’s are absolutely known to cause high levels of confusion. Home urine samples are very easy to obtain with a $5 plastic toilet seat funnel thing designed for this; sterile sample bottles are available at her Dr’s office and she should be lab checked at least every (6) weeks for a UTI.
2) Have her medications checked for side effects involving confusion BY A PHARMACIST. With multiple doctors, one won’t always know what else is being consumed but her pharmacist will. Things like benyldryl , statins for seeking the Holy Grail of low cholesterol, and many other meds, Rx or OTC, that we consider harmless are devastating to a person with dimentia.
3) In many respects, a person with dimentia is no different than ourselves. We have our pride and cherish our independence.
Within (2) years of the initial diagnosis,my wife, then (72) , would have passed every driving test known to man, but she wouldn’t have known where she was going or how to get back. I let her keep her DL, and exchanged the keys she always had in her purse with a set from a car we no longer had but on the same key ring. She was happy and I was happy because she was! She still felt that “she could drive if she wanted to”.

Caretakers, be it spouses, children, siblings , etc have to forego worrying about an official label and just deal with “what is”. Even with a label the odds are there will be no cure if medical or medication issues have been tested for and ruled out.
Once the caretaker and family finally accepts that, there seems to be a calming effect on all (except the patient of course 😂). The job is unbelievably hard but also very very rewarding.
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Reply to BigjimM
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Jeanne Gibbs, thank you for your answer. It made me feel so much better, because I'm already thinking all those things but nobody will back me up. She just renewed her driver's license a couple weeks ago with no problem, but you can bet I'm going to contact the DMV. As for the psychiatric part, she's definitely got issues. She's been in and out of psych care and now refuses to go, even when her primary tried to set her up again. Every doctor she's been to recently has said they want to set her up with a psychiatrist, but she says she doesn't need one and refuses to make an appointment. She does an awful lot of complaining about her issues, but then doesn't want help. Her therapist at her last outpatient psych program told me she thinks mother was just coming for the entertainment and attention-that she really doesn't want to help herself. I'm at a loss anymore...

Thank ya'll for your responses! :)
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Reply to BlueRidgeGal
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Ugh. I'm sorry @BlueRidgeGal that this is happening to you, but not surprised.

I'm a geriatrician and I routinely evaluate older adults for possible dementia. In principle a correct preliminary evaluation can be done in the primary care office -- or by a general neurologist -- but in practice, they either refuse to do it or do it incorrectly.

Dementia means the following are true:
- The person has developed more than minor problems in some aspect of memory or thinking skills. We gather evidence of this based on what family or other observers report the person is having difficulty with (most people with dementia are poor reporters of their difficulties) and also by doing some office-based cognitive testing.

- The memory/thinking problems must represent a decline from prior abilities.

- The memory/thinking problems are not due to delirium, medication side-effects, or a treatable medical problem interfering with brain function (e.g. thyroid dysfunction, electrolyte imbalance, vitamin B12 deficiency, occasionally a chronic infection).

- The memory/thinking problems are not better accounted for by another mental health condition, such as depression or schizophrenia.

- The memory/thinking problems are bad enough to interfere with the person's normal day-to-day function. This last criterion is part of what distinguishes clinical dementia from mild cognitive impairment.

The basics of evaluating an older person for cognitive impairment are to get information on what are the difficulties and how they've progressed over the past months/years, check for medical problems and medications that interfere with thinking, do a good physical exam (including a neurological exam), and do an office based cognitive test. Then we usually do bloodwork (unless it's recently been done) to help rule out some of those medical problems that can affect brain function.

It is a lot for a single office visit, especially if the family doesn't come with information on what kinds of difficulties the person has been having and for how long.

The Mini-Mental Status Exam used to be used quite a lot but it's not a great test. Most geriatricians consider the MOCA (Montreal Cognitive Assessment Test) to be better. It takes 10-20 minutes to administer. More in-depth neuropsych testing usually only makes sense if someone has subtle problems, or if they do quite well on the MOCA despite their family reporting significant problems.

The MOCA comes in a few versions, so it's usually possible to give someone a "new version" of the test...although someone who remembers the answers to the previous one is unlikely to be significantly impaired.

The necessity of MRI is debatable. It is often done and in most cases shows some brain shrinkage and also some signs of damage to the brain's small blood vessels. These findings are common in most older adults and often don't correlate well to the symptoms a person has. MRI does not easily tell us whether the brain's neurons are being affected by the changes specific to Alzheimer's disease versus Lewy bodies.

Of course, not every older person will "cooperate" with the office-based cognitive testing (already it's often a victory to get them into the office in the first place). If an older person resists or "flips out", then I focus on talking to them just to get a sense of what their reality seems to be, and then I also try to get as much info as possible from family and others (what's a problem, what's new, what's changing). After that, we often have to give the situation some time to see how it evolves.

BTW the older people get, the more likely it is that their brains are being affected by multiple dementia-causing processes at the same time, this has been repeatedly shown in autopsy studies.

A UTI can cause new confusion or illness but UTIs would be an unlikely cause of chronic confusion or thinking problems...and one has to be careful about culturing the urine because many older adults' bladders become "colonized", which means their urine grows bacteria in the absence of a clinical infection. This is called asymptomatic bacteriuria, it's a well-documented phenomenon and studies show it's generally not useful to treat it with antibiotics (you just get drug-resistant infections after that).

Hard to say what you can do if you take your parent to a health provider and they do an inadequate evaluation. I suppose either you can inform yourself and then ask the provider to do a more detailed evaluation, or you can look for a different provider. You shouldn't have to help a provider do their job, but there it is...

It is certainly common for older adults with psych histories to develop dementia symptoms due to developing underlying brain changes. Also I would say that developing memory/thinking problems often worsens any underlying anxiety or psych problems. It is a hard situation for everyone involved, especially the older person and their family.

Good luck, I hope you can get a better evaluation soon! I wish it were less common for people like to you to get the runaround from their health providers.
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Reply to drkernisan
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jeannegibbs Jun 1, 2018
drkernisan, your answer demonstrates why we often urge each other to take our loved ones to a geriatrician. Thank you.
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My 87 year old Mom was involved in a serious motor accident in which she broke 5 bones because she was not wearing her seat belt. Prior to that, her driving skills had far diminished and she had prior recent accidents on her record. She totaled her car and was in hospital and rehab for two months. We moved her to where her children live and did not try to get a drivers license. Of course new surrounding and different road ways made her very unsure of obtaining a license in another state. She is now 90 and her health is fast declining and we are looking to put her in an assisted facility, much to her dislike. She has now become like a 2 year old child. My heart goes out to all of you as I now know what you are going through, now.
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Reply to crmcaregiver
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Shaking, "It took DMV to wrestle her driver's license away from her" - still laughing, but my FIL passed the DMV written AND driving test (2nd try), so now what? Someone suggested talking to his doctor, but we live in another state, and he won't tell us anything like the name of his doctor(s). I'm out of ideas... sure glad your issue with it is finished!
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jeannegibbs May 30, 2018
Mally, if your FIL passed both tests, and you live in another state and (I assume) don't see him often, how do you know he shouldn't be driving? What makes you think he is unsafe?
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Shakingdustoff and Babs75: I had to lol at your comments about hiding keys etc. When mother was living with us and her doctor had told her not to drive, I went on a mission to get all her car keys. I had found 5 sets and thought I had them all. Guess I didn't because one morning I heard her car start up and off she went for the day! There's no stopping a person who's hellbent on having her way regardless of what happens.
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