We finally have a new primary dr and she referred us to a neuro!! I feel like getting that done was my fight for so long, now I don't know what I'm doing next.
What should I expect from this appt? What questions should I be asking? How much of a complete diagnosis should I expect to have by the time we leave?

I still have a couple weeks, but getting Grandma in and out of the house and to appts is a lot of work so I would like to have my questions written down ahead of time, so I don't have to try to remember too much

Unfortunately, I didn't have any experience with a Neuro with the folks, but I bumped this to the top so that it will get plenty of replies.

Sooo much depends on the neuro. Mom's, for example, doesn't go by stages and has never really said what stage he thinks she is, only refers to it as "mild" or "moderate" dementia. He did send mom for a CAT scan or an MRI (can't remember which) so that is probably another appointment you'll have to get Grandma out and about for. I'll keep thinking back to her appointment and see what else I can come up with for you.
Glad you finally got a PCP that understood. Don't you feel good that you got what you been trying for accomplished? Its lots of little steps
Marie

Congrats on navigating the maze of healthcare! It ain't so easy and why does it have to take soooo long?!
A DX for Alzheimer's is one that is achieved through a process of elimination. Check to see if stroke did the damage, check to see if the thyroid is out of whack, check to see if there is a tumor, artery blockage, etc, etc.

I suggest that you make a list of the tests that she has already had. Keep a file going and have it with you when you go on appointments. It's amazing how much can get missed if not right there in front of the doc.
FYI once we (finally) got to a neuro that neuro quickly realized what was what and then referred us to yet another neuro (geri-psych). As I read around the message boards it seems that this is par for the course but sure did frustrate us at the time!
Good for you for knowing that pen and paper are your ally!
What questions to ask may depend upon what results you have- does she have stroke damage? Has she had MRI and CT scan yet?

As mentioned above, some docs use the three stage level (mild, moderate or middle and sever or late/end stage). Me personally, I used the seven stage model in the beginning to understand more about the disease and what was to come. After that we just used the three stage model.

Hope this makes sense - haven't had a full cup of coffee yet this a.m.

Keep in touch, please!

Her old stupid PCP did give her a MRI about 9 months ago and he said it showed everything was fine. Then he asked her 30 questions, 12 of which she answered correctly, so he said she has Alzheimers. That's as far as I have gotten with that side of things in the last 6 months. The other 8 million dr appts we've had, have been for other medical conditions she has.

Hey there,
The questions he asked her were probably a part of the test commonly called a mini-mental. She got a twelve? That's a score that requires some attention - not to cause alarm. IF the test was the mini mental the top end (more functioning) is a score of 24-30, 20-23 is mild, 10-19 is mid-stage and 0-9 is late.
Here is a link explaining... maybe this can get you to more of what you need.

Mini mental state exam (MMSE)

It took me two years to get a referral to a neurologist, so congratulations! The first appointment involved a lot of questions for the patient and for me, so be prepared. Even bring a few notes--important areas involve independence with finances (one of the first things to go) and showering/dressing. Also, how long you've been aware of any problems. Remember that it is not just memory, but cognition--problem solving, awareness. The patient will often say they are fine, then the observer will add, but he lost track of which banks he had his accounts in. He lost his atm cards in the machine 3 times, forgot his PIN number, etc.

Our doctor gave the MMSE 30 point test, and observed that there were some memory problems. Then he ordered blood work to check the thyroid and B-12 levels. The most important test was the MRI. We returned 6 weeks later and the doc said the MRI looked good--no brain shrinkage, no sign of strokes, no vascular problems, no brain tumor. No thyroid problems from the blood work. B-12 was low, so they started him on pills for that. So you can see how they work by elimination. The initial diagnosis was Mild Cognitive Impairment. Basically that is early stage dementia. There are statistics about how frequently that slides into Alzheimers.

It's a process. Take good notes along the way with dates. For instance, if she can't figure out the TV remote and she was using it last week, jot it down and tell the doc. The idea is to track progression and to be aware of her level of independence.

Good luck to you. This is also a good time to check the financial/legal paperwork. Make sure you have clear legal directives, even though that seems really awkward. Do it anyway before things get worse.

Is all of this normally done in front of the patient? She realizes that she has some difficulties remembering some stuff, but doesn't think she is nearly as bad as I do. I know that is normal, but it could make for a long car ride home if I disagree with every answer she gives the dr!

We try to not "discuss" mom in front of her. We send a note to the neuro a couple of days before her appt. listing all the things we've noticed and I've found it helps to mention in the note that you prefer not to talk about her like she's not there during the consultation. We try to sit slightly behind her so we can discretely nod when she answers questions incorrectly that the doctor wouldn't know are incorrect.

Hi. I just completed a full neuropsych evaluation for my mom with an Alzheimer's specialist. It consisted of three parts, spread over a month. First was an extensive intake session with mom, me and a close family friend. I had provided the doc with a lot of background in a fax before the appointment, but he wanted to ask some key questions with all of us present. "What's been happening?" "What have you observed?" "Can you give me some examples?" Of course, she either forgot or denied all of the examples and was fairly defensive throughout. He then took her off to do what we think was a Mini-Mental Status exam. This all took about 1 1/2 hours. The second appointment was a week or so later, and consisted of a computerized exam for memory, spacial perception, verbal skills, etc. Although 1 1/2 hours were allocated, this only took 1/2 hour. At the third appointment, he went over her test results and told her and us that they were consistent with Alzheimer's disease -- and more significantly (for her) that she could not return to living independantly without 24/7 supervision. He was very experienced with Alz. patients and did everything he could not to upset her and cause a catastrophic reaction.
Hope this helps, and best of luck. I'm happy to answer any other questions.

This neuro was referred by our new primary doctor who does have a degree in geriatrics, but I am having a hard time finding out too much info on the neuro. I have searched the internet but not having too much luck. I do know she is a female, so as far as grandma is concerned, that's a great start!

Pol-where in MI are you?

By all means, a very brief summary of the problems, just the very worst ones, to go on top of her chart when you go in - they will not read it ahead of your visit or if it is stuck in her chart, in most cases. Then, be sure to sit a bit behind her so you can shake your head, roll your eyes, etc, when she gives wrong answers. Most neuros should know the drill, some will even take you aside for a private talk.

MEKW: It is wonderful that the primary doctor understands the value of referring patients to Neurology when a diagnosis of dementia is strongly susupected. A Neurologist who routinely sees dementia patients as a routine part of his/her practice is the gold standard.

There are many different types of dementias and they usually start slowly. Finding out specifically which dementia is present is extremely important as medications/treatment management can be very different.

Neuro is also quite excellent at prescribing appropriately without over medicating and as things progress, their approach to the disease management is also on the cutting edge.

One of the most important things we can do is to communicate in detail, the changes in cognition, function and behavior that we are seeing in our loved one. However, we want to maintain their dignity as well as their trust, so talking about them in front of them is not always a good thing.

In order to not speak about my Mother in front of her re her changes, (which she would not have taken well), before each appointment, I wrote a succinct memo to the Neurologist outling all those changes in cognition, function and behavior. This was especially important prior to the very first appointment.

I faxed the memo to the doctor three working days prior to the appointment. I called the office staff and informed them that the memo was on it's way in a fax and that it was extremely time sensitive. I then called four hours later to ensure the memo had made it to the doctor's desk.

I also carried a copy of the memo in my handbag the day of the appointment, "just in case." This gave the doctor information he needed to have and made his assessment much more detailed specifically for my mother.

This was so successful, that I continued to share information with him in just this manner prior to each appointment when Mom's dementia was evolving.

Sometimes, Neuro will want an MRI; many do not as MRI is not frequently able to show early changes in the brain. An MRI can indicate prior small strokes or other sorts of impact changes in structure of the brain.

Sometimes Neuro gives a mini-mental test, other times they will have a discussion, ask different qauestions of our loved one and sometimes will conduct further written tests in which one draws the hands on a clock for a specific time and other usually easy performed mini-tasks.

This sort of testing along with a detailed history will tell the Neurologist much and he/she may prescribe medication to slow down memory loss, but an accurate diagnosis is essential in order to do this expertly. It is not unusual to have Aricept prescribed for early Alzheimer's patients for example; but Aricept is not usually given to a patient with FrontoTemporal Dementia.

Sometimes, if things are a bit dicey with our loved one, it can be good to make a consultative appointment with the Neurologist after the appointment to be able to speak freely and gain a bit of education as to what the plan is and what to expect, etc. This of course must be paid for privately.

It sounds as though you are in good hands with your Geriatrician, and you are an excellent, caring advocate for your loved one. Let us know how it all goes for you. We will be thinking of you and wishing you the very best.

Johanna C.

Hi Michelle. I am in Grand Rapids, but unfortunately, my mom is in Scranton, PA. For a variety of reasons, I cannot bring her out here, so I am trying to do long-distance care management. Pretty stressful, and having her call several times a day to yell at me doesn't help ... ;-)

Polly