What can I expect on my mother’s first doctors visit to the neurologist for dementia?

Wondergirl, good heavens, the test your Mom took was no different than the test my primary doctor gave my sig other and I during our annual checkups. She never said either of us had dementia. And we didn't get everything right. For me, I was distracted by the rattling sound the ceiling vent from the air conditioner was making, and told the doctor about that.

Yes, find another doctor.

Mom and I went to the first visit with the neurologist today. I had sent my documentation/notes ahead of time, marked "Confidential"... I had also submitted a letter to describe how her symptoms had suddenly done a 180 after being taken off levothyroxine when her GP found her thyroid numbers were high. They were normal after 6 weeks, so he discontinued the thyroid meds for 6 months.

The doctor came in, said he had read my notes, pulled them out of the envelope and asked if Mom had seen them. I said "No." He said everything had to be out in the open, so I said, "Fine. Now what do you think about the lack of symptoms after discontinuing the levothyroxine?" He replied that the thyroid meds wouldn't make any difference. Then gave Mom three words to memorize for "later" He gave her some instructions to follow for raising arms, legs, close and open eyes, etc., then to sit on the edge of the exam table and copy a drawing that he made. She complied. He then told her to write a simple sentence. She spoke the sentence, and he told her again to write it, which she did. He then asked for the three words, and she told him the words; then corrected herself and put the words in the order in which she heard them the first time. He gave a couple more simple command, and declared that she had dementia. She had attention deficit, and didn't complete the test correctly. Mom protested that she couldn't draw very well on a piece of paper in her lap (the picture wasn't too far off), and that she had done everything else. The doc told her she hadn't followed all the instructions exactly, and she protested again at the dementia diagnosis; that she lived on her own, paid her bills, etc. He argued that other patients were able to complete the drawing… blah blah.

The doctor told Mom that I had notes that showed problems, and that she had excuses for everything, because she was afraid of the diagnosis. He said she would have to give up driving, because it was dangerous, and that she wouldn't be able to participate in other activities that she liked.

The doctor didn't explain when these things might happen, or how the disease progressed, or suggest what treatments were available. I thought it was rude to argue with her, i.e, "You just have excuses for everything, your daughter said you have problems, and you have dementia." -- and then made no attempt to explain what she/we might have to expect .

I asked him to please explain the profound lack of symptoms for the past MONTH. He didn't have an answer, so I asked, "So what is the plan?" He responded rudely that we could do blood tests for thyroid and B12, as those things could affect memory, and to get a cat scan, and come back in three months. Then told us to wait until someone took us back to reception so the tests could be scheduled.

We had waited nearly two hours to see this doctor, with one patient ahead of us; then for nearly another half hour to get out. This has been a huge letdown.

I had lunch with Mom, who said she felt the doctor hadn't done ANYTHING. Then my husband and I headed for home. I went over the appointment with him, and he said it sounded like a visit he had had with a doctor who had made up his mind before talking with him. I called Mom after we arrived home, to let her know what we thought; and that we thought we should find another doctor. She said she was so relieved that I had called her, because she felt like he just wanted a new long-term patient; and she reiterated that he had not done ANYTHING except to schedule another appointment and a couple of tests. I felt that he had a complete lack of compassion for a person facing such a diagnosis. Not a comforting word about how he would help her. What a terrible letdown!

The neurologist told my mom that i ordered the test and then he called me on the phone and said, "i asked your mom if she was forgetting things and she said she no." My mom went on the defense at that point and is refusing to believe the diagnosis of dementia. He messed it up for us.

Hurricane, this doc sounds like a jerk. He should be helping educate you about what to expect. I'd find another guy. This is a very old thread but it's a good issue for disscussion.

My husband had first visit with neurologist in July and had brain scans and was diagnosed with vascular dementia. The neurologist did not address it or offer any advice, guidance, or pamphlets. Visit last week and the only thing he spoke about was his frequent falling and to use a walker. That's it, except see him in a year unless deterioration gets worse. Is that all I should expect from a neurologist?

Igloo offered great advise. Make as many notes as possible about your mom. Make a list of "can do" , "can't do" and whats "difficult". You might have to really observe her to see what is out of the normal routine for her. Investigate the house for signs like Igloo said.
Ask alot of questions, there is never too many or the wrong question. You need to know as much as you can so you can begin to understand this disease.

If her Dementia is in early stages Namenda and Aricept may work for her. Don't expect a cure but a slowing down of progression. These medications like all others have side effects so familiarize yourself with them so you know what to watch for.

Along with the Neurologist, please consider a Geriatric Psychologist. Mom seen a Ger. Psy. that helped treat the other symptons of the Dementia like: anxiety, aggiation, depression. I used to get upset thinking all these doctors used mom as a guinea pig but its all trial and error. Finally, mom got on the right combo of meds that gave her a better quality of life.
I believe that if my mom was treated early enough, her dementia wouldn't have progressed so fast. My mom and I wasn't close so from what I can gather it started 6yrs ago. I have been with her 24/7 now for 2 1/2 yrs. Moms symptoms got pushed under the rug by friends, family and even myself. My father died 6 years ago about the time her symptoms was showing. So we all felt she just was greeving in her own way. Needless to say, early onset Dementia was a factor as well. I would have never thought.

Good luck at the Neurologist.

Gee I can't believe no one else has added an answer.

A couple of other items I'd like to add or suggest If your parent still lives on their own: 1. Go for a visit and look about for notes they are leaving around to see if they are writing what I like to call "intruder" notes.

Like the neighbor is going thru her trash, the mailman is not delivering the mail,
the stole her offering at the church.It usually centers around something or activity they have daily or regular contact with. It's something they believe is happening but is more of an irritation to them but doesn't alarm them.

2. Go into the refrig to see what shape it is in...like is the food old. It seems OK but then you look at the expiration on the jelly and it's 2007. Then in the cupboard there is a line up of Smucker's. There often is a disconnect with time and stuff like this happens. It's different than just being frugal or not throwing old meat loaf out.

They can look at the jar and see EXP 12/07; so the jelly it makes it on the list; they buy the jelly; but then they cannot put what the numbers & the new jar means together to replace the jar. In a way it's like a math problem...they can add but can't subtract. But they keep doing the problem over and over to try to get it correct, therefore Voila! 6 jelly jars.

Alot of the dementia stuff is subtle at the beginning. But if you can catch it early with the right Rx, it slows it down. Nothing stops it but if Aricept or an Exelon patch can give them an extra 3 years of sharper cognitive skills it is a godsend.

On retrospect my mom had dementia related paranoia, issues with language and difficulty with familiar tasks since 2005/04. In going thru her home after she went into IL, I found a bunch of intruder notes. But during that period of time, there was nothing to set off an alarm that there was a problem other than the normal aging process.The more serious stuff started about her 2nd year in IL.

To this very day on a good day, she appears lucid, knows who people are, can carry on conversations, can get dressed and potty on her own most of the time, she is totally ambulatory with just a free standing cane. But if you talk with her past the 2 – 3 minute conversation most people do with the elderly, it is totally scary……animals who appear in the corner, gypsy children who live in the building, amputee roommate stole her TV, poison in the rice, people dancing in the hall, roommate who wants her gone/dead to use her room for daycare center. Fear, fear and more fear.

With my mom, who probably has Lewy Body Dementia, misplacing things was/is a big issue. When she was in IL, she would hide stuff in flashlights, then go into a absolute fury that she had been robbed and would call the police and file reports. Her paranoia got to the point where she called a nephew in tears and hysteria to take her to the bank so she could withdraw all her money as “they were trying to become her”. She would cut off the tops of empty Kleenex boxes and nest them within each other BUT she would hide “important” stuff within the layers. Then when she couldn’t find the $, travelers checks or family picture, she would call the police. When she went to lunch or an activity, “they” would go to her apt (when she was in IL) or to her room (at the LTC she is in now) and would use it as an office or hold meetings there because her room has the “special light”.

Mom totally believes this is happening and it so totally frightening. Unlike in the early stages when it was more of an irritation. There is no way to convince her that it is a “false belief”. This is so common.

I do believe that if we had her evaluated 2 - 5 years earlier, she would still have dementia, but the severity of it when she has an episode would be less. With LBD it tends to be episodic. The neurologist said that the medications really give you about a decade if you start them early enough, But they have to be taken daily.
Go off of them and the regression is quick and you can't get it back. So it's terrific you are doing this now.

They may ask you if she show the following Signs of Dementia:
-Recent memory loss-ask you the same ??’s over & over.
-Difficulty performing familiar tasks- cooks a meal but forget to serve it. Put on pants but not panties.
-Problems w/language-may forget simple words or use the wrong words. They can’t finish a sentence because they don't know the word to use.
-Time & place disorientation-get lost on their own street.
-Poor Judgement-forget simple things, like to put on a coat in cold weather.
-Problems with abstract thinking. Classic example is balancing a checkbook, people w/dementia may forget what numbers are and what has to be done with them.
-Misplacing things – Putting things in the wrong places like iron in the freezer or a wristwatch in the sugar bowl.
-Changes in mood-fast mood swings, going from calm to tears to anger in a few minutes. They become suspicious, paranoid or irrationally fearful.
-Loss of initiative-may become passive.
So think about this and write down a list to give to them.

None of these happen overnight or all at the same time. A lot of what happens depends on what type of dementia. My experience is that getting them evaluated by a geriatric MD & neurologist makes a huge difference in deciding the best care.
So you are totally on the right track on this. Hopefully they will do a baseline Folstein/MMSE done. This is kinda long & takes about 20-30 minutes. This usually get's repeated in a few months or a year depending on how they score to see loss over time and is really helpful to be realistic about what careplan to take. Once they score low on the Folstein then it usually doesn't get repeated. My mom did like a 25 something on the first one and on her last one did a 13 so no more for her as the dementia is far gone.

They will probably order a scan to check on brain shrinkage. This too will get repeated. Alot of this depends on her age as to what they do.

Has she had a MiniCog done? These can be done every 3 mo. The MiniCog you can do with them – I got my son to do it with my mom, as she thinks of it as a game he plays with her. the Mini Cog is the clock draw and 3 word test. It is sadly interesting to see how the clock shape changes over time. Good Luck.