Should I go through any more tests to follow my husband's dementia?

Find a good neurologist immediately preferably a Geriatric one. If he had an mri and other tests did they in fact show dementia and or Alzheimer’s. Get a copy of his records and confirm he was not found with either. A good neurologist will be able to determine this. Could have been strokes to cause this and went undiagnosed. Not all strokes have noticeable characteristics such as TIA’s. My husband had more than one and could not visibly tell but the MRI did. This will also determine his treatment and that is critical.

If the test are showing no type of dementia, then have his B Vitamins level check. B Vitamin deficiency also mimics dementia.

If he is not diagnosed with Alzheimer's or any other form of Dementia, then he needs testing to see what is really wrong, so that whatever he has can be treated before it gets worse.

If it's a UTI, or vitamin deficiency, etc., those things can be treated, and he might be able to improve.

Since this dr is saying not dementia, I think I'd go with the tap to see if they can figure it out. May be some kind of med or treatment to help him - which would in turn help you.

Usually a MRI and cognitive testing is enough .

I have a bit of personal experience here...

My mother is slipping into dementia. Several years ago, perhaps three, her neurologist began pressing for a spinal tap to check for Normal Pressure Hydrocephalus (NPH). My dad, who has since passed away, refused--he did not want her to go through the pain of it, and the shunt procedure that would be the result of finding NPH seemed, well, horrible. (An internal shunt is tucked in near the brain, draining the extra fluid through an internal tube that is run into the stomach. Yikes.) So they decided not to do it. Dad passed away a year ago, and mom began slipping much more quickly. We decided to go ahead with the spinal tap and pursue the shunt if needed.

The spinal tap was evidently not nearly as painful as we had been told. Mom did not complain about it at all after the fact. I was shocked. Then we did have the shunt procedure done--we didn't know what else to do, and decided to just go with what the doctors were telling us to do. It is just an overwhelming thing. They shaved half of her head, and there is an obvious tube under the skull. She was in intensive care for two days. But the recovery was fairly easy.

The doctor would not say whether we would see gains. He said that, because we had waited so long, he thought at best it would slow the progression of the dementia.

And this is important--he told us that the shunt would stop working after 18 months. And no, they do not ever take it out. So it seems that, in our case at least, we were only going to gain a year and a half, at best.

The outcome for us was about 6 months of gains. We are at about 6 months, and she has suddenly started slipping again. He walking is becoming problematic again. She is beginning to hear people singing outside here bedroom all night.

I'd like to mention that after my mom had her shunt surgery, we ran into ALL KINDS of people who had had this done--even a woman who was about 40. NPH is evidently more common than you'd think. It seems that if done early enough, there is a fairly good chance of it making a good difference. I am still confused about what I read about it--the articles make the shunt seem like a very long-term solution to draining the fluid, while our surgeon said that was not the case. Perhaps after the fluid is initially drained in some people, the problem resolves? I don't know, but do ask your doctor about this.

Would we do it again? Honestly, I don't know. We were initially excited about the gains, but it is looking like a short time of gains is all we will get. If I had known that in advance, I suspect we would not have done it.

NPH is idiopathic--they do not know what causes it. I read that one doctor suspects it might be a variation of Wernicke's Encephalopathy, one not caused by alcoholism. He suggested you work hard to correct any possible dietary and nutrient deficiencies and see what happens--especially the B vitamins. My mother's diet is not good--too much sugar, way too many carbs--but they would not comply with diet or supplement regimens I tried to encourage. The meals delivered sit uneaten in the freezer.

I know this might not be too much help, but wanted to share my story. If his dementia has not progressed too much, as my mom's had, you may get great results from a shunt--many people do. This is really the only form of dementia where there is a proven treatment that can be a game-changer.

Please read the NPH article in another reply. I will try to find it and put it here also. It has very good information. Best of luck!!

Here is the article suggested by another poster; I think it is a good overview of NPH, and gives reasons why it might be a good idea to pursue a diagnosis.

https://my.clevelandclinic.org/health/diseases/15849-normal-pressure-hydrocephalus-nph

As I wrote beliw, the spinal tap did not seem to be as bad for my mom as people said it might be—new techniques? I don’t know. I was not in the room, and can only go by what my mom with moderate dementia told me; she did not seem traumatized by the procedure. Best wishes!

I like the answers about the B vitamins! Low vitamin B levels can cause neurological issues for sure! If you do use them, make sure they are methylated! Do not buy cheap B vitamins from the grocery store! Also, there are medications, of course, that can cause/mimic dementia in the elderly! Gabapentin is a big one as well as medication used for bladder control! My father was on both of these and in time they caused him medication delirium! It took a week to get him off of all of his medications except for blood pressure medicine, and the delirium cleared up! His doctor did not want to believe that gabapentin was causing this problem but after speaking with several pharmacists and doing my own research, I learned differently! After three days of stepping him down, he was already showing remarkable improvement. It took three weeks to get him off of this and he was a different person!

Drs are quick to orders test of this or that. Sometimes is unnecessary, I went thru similar cituacion with my husband.The Dr wanted me to have my husband to have MRI for aneurism, he has midterm Dementia and has sclerosis. I refused to have him go thru the test. One time his leg got swollen told his neurologist she told me take him to emergency room. Good grief!! They go strictly by the book. Every patient is different. If necessary look for another neurologist. Best of luck.