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

My 91 year old dad hasn't had a valid license since December and he is STILL driving. Recently we did a mini-intervention to get the keys from him and we ended up calling the police because he became so violent. He ended up in the hospital for several days for observation. Came to find there were other keys I didn't know about so the whole thing was for nothing. The other day, his neighbors found him asleep in his car in the driveway with the car in drive. He ended up hitting his garage door and doing $500 damage. If I could get to his cars, I would but he keeps them locked in his garage (separate building) and I have no keys. Police have been no help. Said something has to 'happen' before they can intervene. Guardianship process is in the works. If it goes through, things will change for him.

@blueridgegal, happy to try to help in a small way.

@jeannegibbs, thanks for your comment. I wish everyone could see a clinician trained in geriatrics but unfortunately, we are too few! For the short and medium term, older adults and families have to inform themselves and then persist, as you are all doing.

I'm glad you can support each other in this. I have been recommending this group to other family caregivers that I'm working with.

It's so true what rwbpiano wrote here, that "a lot of times we know our own parents a lot better than the doctors" know our parents. My 84-year-old mom was showing definite symptoms of some kind of cognitive impairment for about two years, including not being able to keep track of or pay her bills, not eating right, not keeping her house clean, and falling prey to a scam in which she lost hundreds of dollars. Two visits with her to her doctor, and all I got was "mild cognitive impairment" but no verification of anything to be concerned about or to justify the need of assisted living. On our final visit to her doctor before taking things into my own hands, I sent her doctor a letter detailing her symptoms and how she was not functioning well. When we arrived for the appointment, he hadn't even read my letter. Well, my sibs and I moved Mom into an assisted living facility near me, telling Mom that the doctor had said it was time for her to get more help. (I've learned that fabrication with good intentions is sometimes the best method of helping her.) She now has a gerontologist who recognizes all the symptoms of the dementia she has and sometimes identifies symptoms for me! Because of this doctor's diagnosis and statement that she can no longer function on her own, I was able to complete the paperwork to get VA benefits so that she can afford the AL facility she is in. So yes, follow your "gut" as someone who knows your mother a lot better than her doctor knows her. And don't give up until she gets the care she needs.

Shakingdustoff, I'm praying, I am.... he just drove to Chicago (Chicago, for crying out loud!) and back to CO in 3 days - MIL said he was tired....  I'll bet!

Jeanne Gibbs, Just got back on this thread; you asked how we know how FIL is driving. HE certainly didn't say anything about the two wrecks he had a couple months ago, BUT my BIL is his ins agent! (lol). Also, hubby went to visit and got the scare of his life riding with him, and then following him.... after that, he refused to do either, and insisted FIL ride with HIM in our truck. Temporary fix.... BIL may report him, even though he passed his DMV tests, but I doubt it; he has the whole family under his thumb; not me, but that's because I won't put up with his stuff, and he doesn't like me for it. 
Sdhlfk, I will contact DMV in his state; His records would support it now, I think - thanks!

Regarding the driving, what you can probably do is contact the DMV in her state and file an "unsafe driver report". I've read online they will keep it confidential as to who filed the report if you want.

They will mail a notice to her that she is required to take a driving test to keep her license. In our state, they gave my mom one month to get that done or her license would be automatically revoked.

Mom's notice was prompted by her driving down the wrong side of a busy expressway.

The cops called my sister and I to tell us about it without her knowledge and she never even mentioned the incident to us...she just kept on driving!!!

Then as luck would have it, last week someone called the cops on her for weaving down their street on the wrong side of the road. The cops came out again and called my sister (who lives in the same city) and she drove to the scene and drove Mom home.

Next day my sister retrieved the car, parked it Mom's garage, and disconnected the battery. We told Mom the cops had reported her and they had revoked her license. Which wasn't 100% true: it will be revoked on June 15 if she doesn't go take (and pass) a driving test. We are not saying a word about it...we're just going to let that date come and go!

Turns out, she hid the initial report and notice from the DMV about the first incident and had had zero intention of taking the test! She was just going to keep driving.

I really don't know what to tell you except that I deeply empathize, she's endangering others by driving and it's unfortunately your responsibility to take action as much as you possibly can, and this situation truly is crazy-making! The very best of luck to you.

BlueRidge: A couple of items jump out at me--
#1 Her declining driving skills could harm her and/or others.
#2 She is a huge target for crime as she gets lost in a Wal-Mart parking lot.
#3 Being taken advantage of by unsavory people.
#4 Her hallucinations manifesting themselves into not being able to discern reality from the possible voices in her head.

I was lucky enough that my Mom & I see the same primary care Dr., so when I told her about Mom, she believed me & gave me a reference to a clinic that specializes in the elderly. The Dr. there went over all my Mom's meds & ordered blood work to rule out medications/vitamin deficiencies, etc. He listened to all our "stories" about Mom, a psychiatrist came in & gave her a "mental" test. A 3D MRI was ordered. She was diagnosed with vascular dementia and evidence of Lewey Body Dementia. We had to lie about what kind of Dr. she was going to see to get her there, which I hated to do but had no choice.

Thank you everyone for sharing your experiences and to the doctor for your expertise. I really appreciate all of your thoughts on this.

Your Mother maybe or she is suffering from Sundowner's. Have the tests done later in the day; a person with progressive dementia or "sundowner's" will always be more alert in the morning through mid-afternoon.

My step-father has this condition. He's always peppy in the mornings and very cordial until around 4:00-5:00, then things change to the point he starts talking to people, shadow boxing and words I never thought I'd hear come out his mouth.

I had to place he and Mom in a group home. My step-father has become more agitated not only toward the people in his head, but to the staff. Once he's talked out of it, he doesn't remember anything.

He placed his dirty clothes inside the dog food container and does not know how the clothes got there OR who placed them in the container.

Talk with Mom's Dr. He/she can't take the keys, but will "suggest" that Mom be given a basic driver's test, not on the road, but in the area where one must park between cones, 3 point turn etc. You can place a big in the ear of the tester too.

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.

Difficult times ahead...It's probably undetermined what form of early dementia she has, but will become more obvious the longer it persists and the direction it takes. If early balance problems, it may be a sign of Normal Pressure hydrocephalus (NPH), but that should have shown up on MRI. Otherwise, high blood pressure, Alzheimer's, etc. all to be considered. The main decision to make for her and everyone else's safety is whether she should continue driving. My husband had his first auto totaling a year before he sustained a cerebral bleed which proved to be the precursor to eventual Alzheimer's and NPH (the two are often related--sludging of the cerebrospinal fluid reabsorption site at top of brain due to amyloid build-up in brain tissues, and in his case also in his small cerebral arteries which occurs in about 15% of Alzheimer's patients.) The first accident was determined to be the fault of the other driver, who had run a red light at the intersection in which my husband waited for the green light. I had, however begun noticing that he no longer looked left and right at intersections to see if someone was still coming through. The brain bleed came a year later, with diagnosis of probable early Alzheimer's plus NPH. Another year passed, and again--an auto accident in the mall parking lot in which he was hit broadside on passenger side by a gal racing to work who came out of the blue. He was again not at fault, but the car sustained $8,000 damage. He continued to drive, and was adamant that it wasn't his fault that people kept driving into him! Then another two years and I get a call from the ER--another accident where he claimed that someone cut in front of him from the right and then proceeded to brake and try to turn into a blocked street. My husband ran into the side of the car and our car flipped over and he was left hanging upside down by seatbelt and had taken out the driver's side window with his elbow (bad tear into the bursa). He was nervously telling me over and over that again the police had faulted the other driver. However, I decided that he would no longer be driving, as I realized that these were probably all due to slowed processing from all the things going on in his brain, and that we had three times been lucky that no one was killed or seriously harmed. So, of all the things you will be facing, consider the decision about driving to be the most dire of possible consequences. Hopefully you won't have any such serious consequences to deal with but being proactive with dementia patients and loved ones is paramount! Blessings...

while my dad just passed from complications of ALZ, my moms doctor is confused about my mom as well, On one hand it appears she has some onsets of dementia, but on the other she has had OCD forever for which she always repeats the same question over and over, and does other things that would someone with dementia might do. My moms MD wanted to run through a little several minute dementia screenign test with her last week, and my mom basically threw a temper tantrum like a bratty little kid right there in the doctors office and refused to do it, which is almost like a positive test for anxiety though the MD is confused as she does not know if the OCD/Anxiety is masking what could be dementia. This past visit the MD suggested a visit to a psychiatric professional and my mom flipped out over that.

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.

RayLinStephens, Thank you for that- I had no idea Benadryl could do that in the elderly! To my knowledge, mother hasn't been taking it, but I'll check. She has had all her medication checked, and several times, by both her primary and her Humana caseworker. Nothing appears to be interacting with anything else. Now she has had trouble with UTI's and yes, her confusion seemed to get worse when she had them.

MRI's and so on are only showing gross anatomy, not what goes on at the molecular-biology level. Assuming that routine blood testing has been done, to rule out vitamin deficiencies, anemias, etc (lots of blood imbalances can cause cognitive deficits like what you describe) ... the next step is neuropsychological testing. The Mini-Mental-Status-Test can be administered in a few minutes, but it just tells you 'this person is oriented in time and place at the moment.' The whole panel of neuropsych testing takes hours or days to administer and then can take a week to score.

After which, you may have a diagnosis of which particular type of dementia process is going on, and maybe what stage it's in ... or you may get what you already know, 'mild cognitive impairment with some mental health issues.'

If she's obsessively calling her bank to check her balance, is that a sign of an obsessive disorder? or (I hate to even mention this) could it be that someone has in fact been raiding her bank account or in some other way robbing her financially?

This showed up in a friend's family as 'I gave my grandson my creditcard so he could do my grocery shopping, but now there are all these charges I don't recognize'. Some of the charges were at stores where she routinely shopped, so she didn't notice right away that she was spending twice what she expected. Eventually it turned out that the kid (who was in his early 20s) had run into a financial difficulty of his own and had been 'using grandma's card just until he could get on his feet' for about six months! He certainly intended, at first, to pay it right back. But then when he'd run up several thousand dollars in charges he didn't know what to do.

And the only way she found out what was happening, at her advanced age and with some normal-aging cognitive decline, was to phone the bank rather obsessively until finally an officer offered to sit down with her and review the creditcard statements line by line with her.

I am 80 and carry one copy of the ApoE4 gene for late onset Alzheimer's, so I am very concerned about every lapse of memory I have. I still have my car but don't drive at night or to anywhere except grocery store and Dr.'s appointments..no place new. A friend whose mom had Alzheimer's told me that as long as I was worried about developing dementia, then I was OK! I don't think the mini-test done in PCP's office is worth much, as I know all of the questions by now and can prepare for it. But they say there is no reason for me to take the full battery of neuropsychological exams given over the course of 1-2 days as I am "too smart."

My 86 yo mother insisted on driving. She went back 3x till she finally passed the DMV test and off she went. About 4 months later she drove right into the back of a parked truck and totaled both vehicles. Thank God she didn’t hurt anyone. She had no car after that but insists she still has a license and can drive if she could just get one.

Sometimes you have little power to change things and they continue on until some tragedy occurs. It’s a terrible situation to be in.

I'm dealing with this type of situation with my grandma. She has similar details to your family member. She's also nasty to me. We took her to neurologist but like you "normal" my mom was the one who took her so I don't know what the neurologist actually said but for me the bottom line is my grandma is nasty (abusive to me) and I guess it started a year, year 1/2 ago (possibly longer) my mother is too but denies she does anything wrong so I only have one family member who seems to listen and well... She's powerless aside from talking with me

A lot of your "concerns" really could be labeled as "Age Related Memory Loss" - and a lot can be caused by a poor diet, malnutrition and medication side-effects. Never rule out UTI's.

Yes, you should be concerned - but calling the DMV will not help you as people with Dementia can still get a driver's license. My Dad's Heart Doctor told me, in front of Pop, don't be in a hurry to allow him to drive again. Thankfully, we had 1 near miss with a pileup and my Dad from that day on was glad he was no longer driving. I had luckily avoided the pileup and he said his reflexes would not have been as good.

My DH (96) was starting to hallucinate and they took him off Benedryl as it seems it can cause hallucinations in the elderly! Yes, his hallucinations did stop. DH's problem was that his dreams were so real, he thought his dreams were memories. He was very vocal when dreaming and the day he awoke and tried to go outside to help a "woman in distress" - I called the doctor and was told to stop the Benedryl.

It's time to call your mother's primary physician and have her and her medications checked for any needed adjustments.

Even at 96-1/2, my DH had no dementia - his was all age-related memory loss - and even without the dementia, he had sundowners. He scored 25 out of 30 on the dementia cognition test and it was said that was extraordinary at his advanced age.

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.

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.

I'm surprised they didn't clue in on Lewy Body Dementia because of the hallucinations. This is a classic symptom. We were able to get my 91 year old dad to a geriatric psychiatrist who has diagnosed him with 'dementia' but not of a specific kind. It was a general diagnosis. The cognitive tests were the key - they did several. His drivers license is revoked but he continues to drive. We took the keys away but there were keys I didn't know about. It has been a battle!

In answer to your question, I wonder the same thing. My mom went into a diabetic coma 7 years ago, and it seems that that's when her auditory hallucinations and paranoia started.

She has been treated with antipsychotic medication for paranoid schizophrenia which was causing PD like symptoms, so her neurologist had her stop that for 6 months to see if symptoms improve. She also has a family history on her dad's side of Parkinsons AND mental health issues, so that makes it even more complicated.

At her last psychiatric appointment, her doctor said it is very possible that mom could have brain damage from the diabetic coma that does not show up on the scan.

As of right now, it's kind of a watch and see, and she is being treated with other meds to help manage her anxiety/paranoia and muscle twitching/stiffness.

But yes, I believe that there could very possibly be neuro issues that don't show up on a scan. You might get a second opinion and see if any new insight can be gained on how to better manage the symptoms. If it is LBD or some other kind of dementia, it's my understanding that some psych meds (and even certain types of OTC meds) can make it worse, so I can see how important it is to try to find out to know what meds will work best.

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.

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! :)

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!

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?

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.