Can a neurologist make a correct diagnosis of cognitive impairment for my husband without my having to tell her what I have observed?

Send the doc a letter or a fax before the appointment with a cover sheet stating that it includes information you think is important but do not want to discuss in front of your husband. A neurologist can diagnose some types of dementia. But many types are pure guess work an not known until after death and only if an autopsy is performed.

The guesses are based on behaviors and other factors.

I agree with Glad.

When you send the letter, include details like the time of day, day of the week and any significant things that occurred just prior. You may see a pattern of occurrences in the afternoon or evening, the day after an outing, if he has gone too long between meals, if alcohol is part of your lifestyle, after meeting an old friend, etc.

I worked as a MOA for years and often passed notes to the doctor prior to appointments. It is best if you can get the letter to the doctor at least a few days prior to the appointment, to give them time to review it.

Most Doctors have "Patient Portals" and you can communicate with the doctor before an appointment.
Note your observations in this manner.
Be concise but give details if you can (If this makes sense)
Focus on the main concerns that you have.
You can also ask if the doctor would talk to you after or before the appointment. This might not be possible given time restraints.

I go with my Mom to her Dr apts, and they ask lots of questions of her, and she answers with HER version. And I sit off to the side and practice my "eye roll", and luckily my/her Dr gets it. I do correct some things she says.. but as nicely as I can.."you fell last week, remember?" I am also about ready to write the note to our Dr.. but it may be easier for me as we share a Dr and he has known me for about 30 years! And sometimes you just have to bite the bullet and tattle on them. My mom came home from my Aunts a few months ago in terrible pain, we literally picked her up and went straight to Dr. My Aunt had told me she was taking WAY TOO many Tylenol,, and I totally outed her! Was she upset? Yes,, but no one should be taking 20 Tylenol a day! Luckily she got over it, and we got home PT. sometimes you just have to do what you have to do, and let the chips fall...

The neurologist can order a test called a neuro-psych evaluation. It is an objective test and takes about six hours. It can be done over two days. Here is a description of the test:

https://practicalneurology.com/articles/2016-july-aug/a-primer-in-neuropsychological-assessment-for-dementia

You do not have to give input as the testing scores will speak for themselves. Just ask the neurologist to order the test as a baseline.

My mom got one of these tests after her initial MME test indicated impairment. Those short tests like the MME that are done during an appointment are mainly screening tools, the neuro-psych eval is much more in depth and they can not be fooled.

It would be a good baseline for your husband whether he meets the criteria for dementia or not. Oh by the way, since the DSM-5 came out dementia is now called "Neurocognitive Disorder" and it can be major or minor depending on the test scores.

Good luck.

Hi Monica 19815- Have you developed a sense about the “why?” Of your situation?
For instance, do you need to know why husband exhibits certain behaviors or is it more important for you to know why the changes in his brain cause particular problems?

Are you keeping a record, for yourself, of what you see that concerns you and the dates, time of day, and length of time the episodes occur?

Will the neurologist respond to phone calls from you? Might you ask her if she would consider a baseline psychiatric/psychological assessment a worthwhile addition to developing a meaningful profile for managing his care as circumstances move forward?

It seems to me that the line between maintaining client planning and self management and assuming more and more responsibility as caregiver is a very fuzzy, messy, gray area, with caregiver typically being in the more difficult and awkward position of the two.

If you see a NEED to gently take over the reins based on your observations of your husband, ask yourself if what you are considering is based on your husband’s safety, comfort, and overall welfare, then make your decisions accordingly.

If you are acting out of love and respect, your efforts cannot go far wrong.

Neuro psych exams are said to be grueling for those with dementia. My mom never had one, she would have never been able to complete it. The doc diagnosed her with dementia of the Alzheimer's type. That was all we needed to know gave us direction on how to proceed. Some will want the Neuro psych exam, but is it necessary for our loved ones to have one. Most don't those that do are definitely the exception. The exam will not diagnose the type of dementia, there are more than 70.

Different strokes, indeed. There is absolutely, not one single solution for everyone.

What type of major neurological disorder was mom diagnosed with, Piper?

Actually, the neuro can't talk to you unless he allows her to under HIPAA law.   A good neurologist will send him for testing, but he can refuse to go and my guess is he will refuse.   Let him talk to the doctor alone, he may be more open with an MD in a private setting where he's not afraid you will get upset.

I am sorry, but I think dishonesty isn't right between you and your husband right now and think you should be honest with the doctor, but ONLY AFTER being honest with your husband. Make your list of things that concern you. Go over them with your husband. He may deny them all. That's fine. Just tell him that you understand, but that these things cannot be ignored, as he may get help if you are both honest with one another and with the doctor to the best of your abilities. He is worrying and going into paranoia, and I would be too if someone was skirting around the truth with me, and not being honest. What is he to think? And if there is any cognitive failure, he will think the worst almost for certain.
Please be honest. Tell him you are being honest. If he says NONE of that happened then tell him you thank him for sharing his own perspective with you and you will consider all of it.
Whatever you decide to do you need to make an honest, short, concise list for the MD.

If this is a new doctor, first appointment with the neurologist he or she is likely going to ask for your input or observations/concerns at the appropriate time anyway. I hear you on not wanting to rub it in hubby’s face the things you witness him doing but since you have had these open conversations with him maybe offering one or two of the major things or even a general area “ he seems to forget things more but I’m not sure if that’s disinterest, distraction (ADD) or just me” Broaden it a bit to give him an escape to save pride while clueing the doctor in on some of your concerns. A good doctor will see the hesitation to say too much but concern and find a way to get more if they really need it but I agree with others that encourage a neuro psyc exam just as a baseline even if nothing else. I wish my mom had had one prior to her stroke but she has had 2 since the stroke and it has helped us help her as well as shown improvement from original as cognitive stroke stuff improved. They would be able to weed out more if she had had a baseline pre stroke though. Hopefully this neurologist will suggest this testing and be able to present it in a way that doesn’t feel as threatening to your husband as it might without the possible benefits it could provide. My experience has been that focusing on the positive positives that could come from the test or simply maintaining the benefits of having a baseline for the future wether it’s for ADD or autism now or something else in the future are well worth the time. This test can simply direct the patient to areas they could focus on to refits their brain too or keep it sharp, it isn’t a right or wrong type of test that you pass or fail. At least that wasn’t the way results were presented to us.

Your husband’s situation sounds exactly like mine! At the appointments before he was diagnosed with cognitive impairment due to Lewy Body Dementia (LBD), the neurologist mostly asked me yes or no questions. I, too, did not want to volunteer too much information in front of my husband. When I did once about navigating I never heard the end of it!
It is important to get a correct diagnosis because some medications, sedatives, for example, can be very problematic for certain kinds of dementia. My husband was diagnosed at Mayo Clinic following a reaction to anesthesia.
I think the answers you have here from others are really insightful and helpful. Good luck to you!

Prior to appointments I sent letters to primary care provider and a detailed letter to the neuropsychologist who tested my mom. I encourage folks to send doctors written observations. Just a short paragraph introducing yourself as spouse, adult child, etc. and then write the observations in a list of numbered items. This makes it easier for medical professionals to read. Avoid long, rambling paragraphs.

Example:

1. She routinely confuses the TV remote and the phone, then gets upset when the remote won't make calls.

2. She can no longer write a check correctly...puts the company's address where the name should be.

3. Her neighbor called me to report that she rang his doorbell at 2 am and said she was ready to go to bingo.

BTW...all of the above true for my my mom.

We often will discreetly hand a note for the doctor to read before coming into the room with mom. It works well. My guess is that they are used to this. You can call ahead and talk to his nurse about how best to do this if you like the idea. This is what moms doc suggested.

Deja vue for me...I was not prepared for the first Neurologist visit....and I had know idea he would quiz me in front of my wife...
After that horrible experience...I got a different neurologist...
This time I had two phone conversations with them prior to our visit...
So, same advice repeated...talk to them privately and discuss your observations and ask then to explain their process...

I have done what many others have suggested: I sent a note to the doc before my mom's appointment. I think the more information a doctor has, the better, since some things might not show up in  a clinical exam, but might be very present on a day-to-day basis. I even wrote a book about our travails: "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale."  Best of luck.

If you take a friend or neighbor with you to the appointment, they can take your husband out of the room to distract him in some way to allow you to talk to the neuro. I’ve done this many times and understand that it’s not good to have your husband sitting there listening to his list of symptoms.

Prior to the appointment write a list of the things you have observed. Give them to the nurse with a note telling her to have the Doctor look at it before going in the room. The doctor will appreciate it. Any information you can give will help to make a complete diagnosis. I do this with my in laws and it is always appreciated. I am a retired Medical office manager and I can tell you, it makes it so much easier with no pressure on you. You are not breaking a trust with your spouse you are helping him and if he does have issues you will be his caregiver so, its better to do it right now. Good luck. Hope this was helpful.

I always had a written list of things I had observed and just handed to Dr, when we had appointments. That way I did not have to "tell on him" in front of him. Worked well.

Good info above, writing a letter is excellent but also if you have times during your day that you husband is not around or can hear you on the phone, you could call the doctor's office and ask to speak to the doctor or ask her to call you back. Unless you have a POA most likely she will not discuss your husband with you but you can tell her what you have observed and ask that it be entered on husband's records. You must do this! A few years ago I was concerned about my husband's alertness and memory and a day prior to his check up I contacted the doctor, explained what was going on and they did a more through check up and medication review and made some changes that I'm sure they would not have otherwise.

Any good doctor would appreciate your input. You can share notes via private medical portal or fax, take them with you, or have a phone conversation with the doctor. He should also be able to visit the doctor privately as well.

Consider writing down your observations - be as specific as possible. Send him/her your observations before your hubby's next appointment. The neurologist may ask directed questions about situations or scenarios at the appointment for further clarification. You are not betraying your husband by pointing out changes in behavior. In fact, if your hubby's behavior changes may indicate stroke of disease in specific parts of the brain - definitely helps the doctor to know where to look on an MRI.

During a phone call with my father he told me things are happening with your mother, so I made a point to come up for a visit (lived several states away).  I too noticed issues with my mother that I actually wrote 2 letters one to her primary doctor (and neurologist) and made an appointment with primary when I knew I could be there to go with her.  Her primary asked how her memory was and my mom said fine, but I said mom you have forgotten a few things and on that note her doctor jumped right in and said that she was going to set up appointment with a neurologist just in case if she started having memory issues they would know how to proceed in treatment. 
Here are a few examples of my mom issues that were included in the letter plus many more that were listed:
My mom was forgot how to find the hospital my father was in and kept going to the apartment building my grandmother used to live in and was upset they wouldn't let her go up to my dads room. 
Every day my father was in the hospital I called my mother just to check on her, but after my father was home for 3 weeks one day when I called she said I can tell you now that your dad was in the hospital.  I told her that I knew that and I called her every night, but she didn't remember it.
My mom usually went with my dad when he went for physical therapy, but one time she didn't and when my dad came home the stove was on with a pan on it
One day when I called my father said they were filling out some legal paperwork and I could hear my mom in the back ground wanting to know how do I spell my name.
This is a very small example of issues my mom was having.  Those letters were a heads up to the doctors and at the appointments no fingers were being pointed as you did this or said that, the doctors already knew.  It made handling the appointment so much easier.   For the neurologist appointment, I was unable to get off of work and make the long trip, so my brother went with my parents and when the doctor told everyone that my mother did not passed and my mother has Alzheimer's, my brother and dad were shocked, but it didn't seen to faze my mother.  The neurologist put her on medication to help slow the progression of Alzheimer's, which she was on for a couple of years and then as the disease went into later stages we took her off of it.
So we now actually had a diagnosis's and now could learn and check into how to handle this, what arrangements needed to be made.  Unfortunately or fortuntely my dad passed away 7 months later after my moms diagnosis, so he did not have to see and try to take care of my mom as this dreadful disease took it's
toll.  My parents were one of the rare few that were so in love with each other for their 65 yrs of marriage.  My father would have never agreed to put my mother in a memory care center that would have killed him alone if he had to do that.
Do the letters with his doctor's, if you don't feel the doctor either didn't take the letters seriously or didn't read them then make a consultation appointment for yourself to talk to the doctor (realize you may have to pay for this appointment yourself).  Definitely go in with him at the neurologist appointment, because he isn't going to remember what the doctor says.

Monica, I haven't read all the answers but the ones I read are good. I just want to add that you are the one who notices things before anyone else would. I know I did long before others thought there was a problem. As others have said, you can call and talk to the doctor but sometimes that is hard or use the portals. I actually left messages with the nurse of things that were happening before the appointment and the doctor had this info when we went for our appointment. Be sure they do not let on you have provided info beforehand. Some doctors do not seem to understand as you would think they would about how this may make your husband feel. Another thing is to write a brief message and just pass it to the receptionist if you can. I always checked my husband in so he never knew I did that. That way I could convey concerns I had to his doctor.

My husband was 70 before things really progressed. He was also very mean and hateful to me and started on 20 mg of Lexapro. He was a different person after the Lexapro but when they started him on Aricept he went back to the bad behavior. The doctor stopped it for a month and then restarted the Aricept. That time it was better for some reason. That was about 6 years ago and he is now on a lot of other Alzheimers drugs and I'm dealing as best I can. Hopefully some of these post help you in moving forward. I pray for all of us as caregivers. Keep the faith and try to get through today because it's hard as you already know!

I am a caregiver for my father and have run into this concern. Consider preparing a note with your conern prior to the appointment and handing it to the medical assistant to give to the doctor prior to the appointment. I have handed a note just after they call us in to go to the examination room with the other paperwork. I have listed at least three main concerns and this information seems to be helpful to the doctor and doesn't lend to a denial response or anger my father when the doctor asks certain questions as part of the assessment. The goal is to share what I have seen and help my father maintain his dignity as he experiences cogntive issues. My experience has been that the doctor will use this information to determine the way in which he provides feedback and explains to my father what is happening and the why behind the possible any restrictions he might prescribe.

Remember sometimes, they are aware that something just is not right and can become frustrated with themselves and scared. Typically, the person they love the most is the easist target for outburst and blame. I am often the brunt of the cold sholder or silent treatement. I have to remember that it might be the disease talking at times!

I am curious to learn what others think about this approach.

Can you call in private and ask for the doctors email address? Due to the nature of the problem I’m sure the doctor would understand the need for discretion in your part.

I always emailed the Dr so I didn’t have to speak in front of my friend. But include in your letter or email, that this is confidential and do not tell your husband you wrote the Dr. In other words tell the dr not to throw you under the bus! Mine never did but I know of friends who’s Drs did.

I kept a document going on my computer writing down new things I observed. Right before the day of the appt, I would condense it into a small list. 1., 2., 3., Something the doctor could quickly look at. I handed this to the receptionist when I signed Mom in. This way the Doctor knew what type of questions to ask. I saw him refer to my notes more than once.

For my father, the neurologist recommended a PET scan and it showed early onset altzheimers - he was middle 80's at the time. It never progressed further.

This situation has always been hard for me, as a caretaker for a man with Parkinson’s and Dementia.
I ended up building a close relationship with his nurses, so I could let them know of any declines or other things I observed, and she would pass on to doctor. I will usually call her a few days before his appointment. I never like to talk about his illnesses “behind his back” but being it is so hard ( emotionally also)to talk about The declines I see at the appt. with him there this has worked really well.
I also found myself holding back info to the doctor for the reasons you described.
Being it is so important the doctor knows everything, I don’t see my method as talking behind his back, but rather making sure the doctor knows everything.
it also makes the appointment much more calm for my patient because the doctor does already know in advance, so he knows how to gently talk to him, the questions he asks ect.
I know everyone’s situation is different, but I just thought I would let you know what has worked best, for everyone, with the man I care for.
I hope you are able to find something that works well for you.
your husband is very lucky to have you!