What questions should I ask the neurologist?

Thanks to ALL OF YOU for your input. I was diagnosed with age related cognitive disorder by my internist, and he referred me to the neurologist I have seen once. All tests were done in house so I should be able to get copies of all reports tomorrow when I see him for my first follow-up appointment. I had been aware something was going on with my memory for at least a couple of years. In fact, the memory issue (impossible to find words; repeating myself even in the same sentence, etc.) had seemed to speed up in recent months to the point I have become very concerned. The neurologist immediately diagnosed me in his office at the first visit, but I have no idea as to type, etc. and I reached out to you guys as the carers for help so I wouldn't overlook any important question, etc. during my visit tomorrow. Sunnygirl1, I have found a friend to attend the visit with me tomorrow so thank you for that important suggestion and I am sure he will make sure no question goes unanswered. I will also find an Elder Law attorney per your suggestion. I will get a copy of the Memory Rescue book and ask him about the SPECT scan. All of your replies are so valuable to me. You all will never know how much I appreciate this. I will definitely be getting back with you all with an update. Again THANK YOU! Hugs all around. Phyllis

Do you have someone else that you trust to got to this next visit with you? If so, that might help make sure that you cover everything. I'm not sure of your situation, but, I know that when I took my LO to the Neurologist, he not only prescribed an MRI, he did an in office evaluation, plus, ordered a Neuropsychological evaluation. It's quite detailed and provides the doctor a report on the strengths and weaknesses. I might ask him about that and see what he thinks, since you want to know what is causing the problems.

I might also ask if he has much experience with dementia cases. The one that I took my LO concentrated on that. He diagnosed my LO with dementia based on her medical records, info from family and office evaluation. Her Primary had also diagnosed her. What he didn't know was what was causing it. Later, she was diagnosed with Vascular Dementia.

I hope you'll get more responses on this. I might also seek a consult with an Elder Law attorney to make sure your affairs are in order and that you have your Durable Power of Attorney, Healthcare POA, etc. completed and that originals are with those you have appointed for safekeeping. Please let us know how things go. I hope you can find the answers you are seeking.

Hello to ALL. I can only say hip hip hurray! I am just back from the neurologist appointment after having all tests done, etc. and he told me I have "mild cognitive impairment." I asked about being referred to a neuropsychologist and he said there was no need. I received copies of all reports and I have not had a chance to look them over in detail. He said there were two medications I could try but those medications were not going to help me in any significant way. The did recommend a book, "The End of Alzheimers." I will purchase that. They heavily recruited me for one of two possible clinical trials. I don't know if I will decide to participate in either of those trials or not. I might not even qualify. They require a PET scan plus another MRI. One of the meds is administered intravenously once per month. It is a very long study. I have had lung cancer caught very early in 2008 and I am still cancer free but have been exposed to a lot of radiation due to frequent CT scans, etc. as the years have gone by. Next January, it will have been 10 years since diagnosed with stage Ia lung cancer and I don't think adding a lot more radiation would be a good thing for me to do. I still know there is something not quite right with my brain but perhaps it's just plain old normal for my age so I am going to try to not fixate on it but also become very proactive as far as doing all that is recommended to improve my brain function (diet, exercise, etc.). Again, I cannot thank all of you enough for your recommendations. Tonight I am celebrating! You are all just a great group of people and are such a tremendous resource for those people in need and are lucky enough to find you all. God bless! Phyllis

Sunnygirl1, I cannot tell you how much I appreciate your response! I have made many notes of questions but had forgotten about the neuropsychologist referral. I have the POA, Healthcare Directive, etc. in place, but in reviewing it today, I think a few changes are in order as it has been some years since I completed those documents. I will seek out the advice of an Elder Law attorney (thanks for that advice). I am trying to stay composed about the whole situation while I can but want to lock down everything I can as soon as possible. I will let you know how it goes on Wednesday! Phyllis

So sorry to hear of your concerns and diagnosis.

My own experience has been that although neurologists and neuropsychological testing can be helpful for establishing a diagnosis, they are not that helpful in planning for the future...or even figuring out how to manage day to day challenges of living with dementia. (For that, I recommend a support group such as this one!)

The big picture is that if they are quite sure you have some form of dementia, you need to start planning for the following:
- Do you need help now, and if so, what are your options for meeting that need?

- People with dementia often lose insight on their abilities or on what might be unsafe. Who can monitor that for you, and who will intervene to help you when it's time to stop driving, or let someone else manage your finances (you may want to allow someone to start supervising sooner rather than later) or allow more help in the home? Decide who that might be and express your preferences for when and how they should intervene.

- You should assume you will eventually reach the point that you cannot manage the "instrumental activities of daily living"; these are the self-care skills we learn as teenagers that are necessary to live independently, they include things like managing shopping, cooking, finances, transportation, medications, and home maintenance. When you are no longer able to manage those, what are your options? (Family often takes this on but sounds like that's not an option for you.) Will you have to move to a more supportive housing situation?

- Most people with dementia will eventually decline further and require help with basic activities of daily living. These are the life skills we learn in early childhood, like walking, getting dressed, getting to/from the toilet independently, feeding oneself. How could those care needs be met? (This often requires placement in a facility, unless you have the funds to pay for 24 hour care at home.) Your friends will probably not be able to provide this degree of hands-on care, but you will need them to coordinate your care and supervise to make sure you are well cared for.

There is also the issue of planning ahead regarding your medical care and discussing what your preferences and priorities would be, once you'd declined further. At a certain point, a lot of "usual medical care" is unlikely to benefit and often causes stress or harm, but the medical community will keep doing what it usually does until someone says it's time to change the focus of care. You need to prepare your POA to do that. TheConversationProject.org has a conversation kit for people diagnosed with dementia, and there is also a new advance directive designed for dementia at dementia-directive.org.

In general, it's best for anyone with a dementia diagnosis to get their healthcare power of attorney involved as early as possible, so that this person becomes familiar with your health situation and what's important to you.

I'm so glad you have friends willing to help, but I will say that I've seen friends in this position and it often becomes a heavy lift for them. (Obviously, it's tough for family members too, as many in this community will attest.) Your healthcare power of attorney will likely have to make medical decisions for you for years, and your general/financial power of attorney will make decisions related to your care and housing for years as well.

You can make this job much easier for your friends by planning ahead as much as possible right now. I would say a good geriatric care manager will be better at helping you plan than the neurologist will. Reviewing your financial situation & planning with a capable elder law attorney is important soon.

I will finish by saying that this is a lot for you to think about right now, and I'm sorry for that. You can and should give yourself a little time to digest this new diagnosis and take care of whatever emotions are coming up. You don't have to do all this planning this week, or even this month.

But, don't wait too long, and make sure you address at some point in the next several months, while you are still able to do so. Your friends and powers of attorney (and your healthcare providers!) will be very glad you did.

good luck and take care.

Just going by how clearly you stated your concerns, I don't think you should be worrying quite so hard.

Did the neurologist order a PET Scan? That would indicate the type dementia - but Aricept kept my dad from progressing during the 7.5 years I tended him. Everyone thought it was funny that at age 82, he had Early Onset Alzheimer's.

The problem with giving it a label, is you will tend to overcompensate with worry. It sounds more like "age related memory loss" than dementia because your question is so well articulated.

Did you ask for copies of the reports? If the MRI was done out of office at a place that typically focuses on MRIs, you could have asked them to send you a report. Same with the doctor or service that did the U/S, and drew blood for analysis.

I always got copies of reports, read them, looked up terms I didn't understand, and made a list of questions to ask.

But first, what was the purpose of your visit? Was it to determine if you have dementia? Or perhaps do think you had as stroke, and if so, did the MRI provide any indication of one? Did the carotid US show anything suggesting you might be in danger of a stroke? Or anything contributing to dementia?

I.e., what was the reason for the tests if not to address possible dementia, and what did each of the tests show in terms of that, or of any other issues of which you should be aware? And if there are concerns, what are the options for treatment, and how serious are the conditions?

Please do let us know how things are going. This is a lot to sort through, but, it sounds like you are on top of it.

Thanks to all. I will definitely be making plans for the future. I have ordered the book and will make any necessary changes regarding exercise and diet and anything else I learn from the book. I will also stay in touch with this website as you are all precious to share all of the information you have obtained from real life situations. I also will take care of updating all documents with all of this in mind. What a great resource you all have been. I wish you all the best in your travels through what you may be dealing with regarding your loved ones. Hugs to you all. Also, I was very shocked at the diagnosis. I am thrilled and unafraid of anything else perhaps coming my way. To me nothing is as frightening as losing my mind!!

Following this question! I am taking my own mother to see a neurologist in a few weeks. Even though her primary doctor says some type of dementia, I am just wanting a discount double check. I picked up a copy of her first c.t. and m. r.i on a disk at our local hospital to take to the neurologist. It costs nothing and will let them compare to any new scans they will do. I guess like everyone, I am just looking to make sure I am doing my best for her. Keep us posted! I've been caring for my mom at her home for 6 years.