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

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.

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!

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 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!!

Usually a MRI and cognitive testing is enough .

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.

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.

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

***Has he been checked for urinary tract infection, which can cause symptoms that seem just like dementia but are actually delirium & needs to be treated with antibiotics urgently through full course.*** I'm sorry you've had to deal with so much frustration. He needs to be seen urgently but also pick up some echinacea tincture at your soonest convenience and follow the instructions. Also, get him some dried cranberries as fast as you can. Make cranberries part of his regular diet, as they help prevent bacteria from sticking to urinary body parts. While he takes antibiotics, be sure to give him foods that will help him keep "good bacteria" in his colon: Cultured yogurt, cultured sour cream, miso, kombucha tea, real living saurkraut (you'll know it's real if it's refrigerated and costs a fortune), and other fermented foods. Let us know if he does have a UTI, okay?

I don't know how painful a spinal tap is. I don't like pain so I avoid it as much as possible.

My only personal experience with a neurologist resulted in nerve damage that he damaged while performing a test in my foot.

Dementia and depression together are common.

I'm not sure what benefit is to be gained to find out what stage of dementia he is in. To me, that is like asking why a baby on his 8 month birthday, is not able to walk. Now that my Mom's dementia is really observable, I notice that the severity of the dementia changes day-to-day and sometimes hour-by-hour. In other words, at 1 pm, she doesn't remember how to walk and at 3 pm, after a nap, she is walking with her walker and doesn't remember that her legs refused to walk just 2 hours earlier.

1) I would concentrate on quality of life for your husband. See if you can get him out of the depression and into a place where he can look forward to the future. (e.g. do something on his bucket list? take a cruise?) Address any physical pain that he has. I noticed that if the brain is focused on the pain, it has little energy left to focus on memory. Minimize the pain, and memory starts to improve.

2) What does your husband want to do? Dementia patients can learn new skills. Most of all, it is important to keep and exercise the skills that they currently have. "Use it or lose it" is very true for dementia patients, both mental skills and physical skills.

3) Does your husband have a geriatric doctor or an internal medicine doctor? I'd get a second opinion before doing a spinal tap or any invasive test. If he is taking quite a few medications, have the doctor or pharmacist review all the medications to see if any can be eliminated or updated. You would be surprised how many medications are taken to help with the side effects of other medications. In addition, new drugs are coming out all the time.

In my current frame of mind, knowing the stage of dementia that a person is in, only leads to unrealistic expectations or denial of mental stimulation a person needs to enjoy life. As a caregiver, I'd rather just take each day as it comes and try to help the person live each day to the fullest as a functioning adult while preparing for life for the next day (and retain my sanity).

Do you have adult children? What do they suggest?

It looks like I am in the minority here because I think you should go ahead and have the PET scan. I would give anything if my husband’s report came out with no Alzheimer’s. Something is wrong and it may be FIXABLE unlike Alzheimer’s. What is your alternative? Wait until the worst happens? For better and for worse, in sickness and in health-I would fight for his life.

Beeperboo: Do not put your husband through a spinal tap as there is nothing to be gained since you've stated that "he's gotten so much worse with dementia."

Enough already! What more can you learn and how is it going to make your lives better?

There is no cure for dementia or Alzheimer's and no drug to eliminate it so what difference will it do to know what stage he is in? I would concentrate on his depression - and certainly going to doctor after doctor will add to it. If he is in relatively good health, and not on a bunch of meds which may be inadvertently be causing his depression - then concentrate on the depression, rather than the "dementia". Try the basic things yourself - getting out into nature, listening to music he loves, finding a craft he enjoys doing, surrounding yourselves with family and friends. Open the shades and let the sunshine in! Just see if any and all that makes a difference. Reach out to your local senior center and see if you can get a social worker to come visit, talk to both of you, and make an assessment. There are a number of things to explore before putting hubby through a barrage of unnecessary and/or unproductive tests. Go with your gut.

I just read all of the answers here. Seems that there's a consensus that folks do not advise a spinal tap. I'd just like to second the advice that you check in with the primary care or internist doc to go over meds your husband is on and see whether some may be causing some of these symptoms. Second, after the regular medical doc, I'd advise consultation at least once with a gero-psychiatrist. They are not easy to get to see, but if you can, they will be able to interview your husband and at least tentatively determine whether psych meds could be helpful (and often they can, even if there is a dementia going on.) Wishing you the best - a difficult situation!!

Gee, I never heard of a spinal tap for diagnosing Alzheimer's...........now I see what you're considering. I just want to know if they can sedate the patient so that he/she cannot feel the nightmare. If they can't, I'd look for a Geriatric Psychiatrist to partner with me to get her diagnosed.

You mention “some underlying condition that has made his symptoms so much worse so quickly”. Have you had him checked for a UTI? Sometimes this can be a cause, especially if his condition has recently “worsened quickly”.

Ask the doctor how it will change his therapy, care, course of the disease. If it won't do much, then don't go thru with it. Doctors often have to recommend every single test out there because someone sued them for not offering a certain test. It's defensive medicine.

The rule of thumb I used with my husband with dementia, a benign but troublesome brain tumor, and older age was this: If we do a test and find out something is bad enough to fix, do we fix it? or, is the cure worse than the condition? If we aren't going to fix him, why put him through the test? Quality of life vs quantity of life must be considered with fragile loved ones. About five years before my husband passed away, he had a very bad reaction to anesthesia. I swore after that, I would not subject my husband to anything upsetting. While I really was interested in everything concerning my husband, I figured his well being was more important than my need to know.

when my son was little, he got sick and required a week in the hospital on antibiotics. I asked the doctor a few times what was wrong with him and his (slightly snarky) reply was - do you want to spend a lot of money on what made him sick or money on making him well?” He did have a point.

i agree, I wouldn’t put your husband through that. I assume he’s on meds already, maybe look into the depression issue a bit more, but maybe do the opposite for a while and do some things you use the enjoy.

i took my mr & mrs, even though they were both wheelchair bound, to the beach to watch people and a sunset. Bought ice cream from a vendor. Idk what you can do but God bless you for your love and devotion to him.

You know that he has dementia and that this journey will mean steady loss of memory and skills. You do not say if he is on medication to slow progress maybe by a third which may be only a couple of years.
My MIL only saw a geriatrician for the medications and then there was a point it was removed due to quality of life
I knew of my mom's loss of memory but my brother and I chose not to go with diagnostic tests. What difference was it going to make other than lugging her to another doctor's appointment. For those scans, the patient is not supposed to move around which makes them difficult.
We just let nature take its course over 11 long years and only to move her to a higher level of care when it was time. Going from IL to AL to MC or SNF means that the person will temporarily live in a place for short periods and we knew that even with moving furniture about was never going to be the last place.

Why do you think your husband has Alzheimer’s disease and dementia even though the PET scan came back negative? Your husband is 84 years old and you should not torture him with a spinal tap. Have you spoken to his doctor about his depression? Have you considered counseling for him? Perhaps he needs a change of scenery.

Depression can cause forgetfulness. Hopefully, once you find out why your husband is depressed then you will be able to find a way to help him.

I can only suggest you discuss this with the neurologist.
ie "What exactly are you looking for? What can be done about anything you might find? Did none of our PREVIOUS MRIs show anything? What is the testing you are doing telling you? What do you suspect? What could be DONE about it if you find it?" Generally, with most dementias-- there are at least four or five distinct types I can think of-- there are symptoms that are clear in giving some idea of their "type". For instance, my brother's diagnosis of "probable early Lewy's Dementia" was given solely by his OWN subjective symptoms: discriptions of his loss of taste, his loss of balance, his hallucinations and what they were like, when they occurred and what brought them on, of his foot tapping while he stood occassionally, of his occ. difficulty with swallow. Many frontal lobe problems have such violent acting out that they are suspected long before there is the slightest sign of anything on scans. And there is quite honestly NOT a whole lot shown on scans and MRIs over time. Often doctors tell us--certainly in the recent past--there can be no final diagnosis until after death, and then only if you wish to have a autopsy. Now they CAN identify the loss of different matters in the brain a bit more; this all advances with time.
I am just thinking that it little matters at this point? Nothing in the spinal fluid can show up that will have some immediate "cure" thing invloved, I would think. If something is happening it has been now for some years. You yourself are aware of the progression of the changes.
I think this is up to you after a good talk with the MD. If he has no TIME for such a talk then I would say that YOU and hubby don't have the TIME for all these scans, which almost make me feel as though he is being used as an ATM machine.

Good Morning,

I remember my grandfather many years ago, someone who never complained and who was in WWII--he had a spinal tap, he said "never again".

This beast of a disease--Alzheimer's and all of the other cousins called Dementia you can't always pinpoint it. Could be Lewy Body, Parkinson's, UTI, dehydration or all of the above.

Occupational Therapist, Teepa Snow has a booklet out on the stages of Dementia aimed at Caregivers. It's very informative. I have mentioned this on several occasions on this forum. Because most of us, the patient included, asks--where are we in all of this. Basically, how long is this going to go on and my mother asked me, how is this going to end?

I take Mom to a Neuro-Psy Geriatrician every 6 months. I literally had to stop the CAT Scan tech from continuing with the 2nd scan to compare the previous one because I thought my mother was going to have a heart attack literally in the "open" MRI. We left, I documented it in the portal and took Mom out for ice cream afterwards so doctor's won't think we overlook a test.

Don't torture the elderly. Everything is testing. If you can find a happy medium, a routine, good doctors, fresh air, an Up Walker Lite, good walking shoes, good bedding, socialization--keep the tests to a minimum but keep them comfortable.

I, too, had to streamline medications, however, the brain ages and wears out. One needs enough serotonin to the brain for executive functioning skills. Medication is needed but you have to find the right mix--Citalopram, Abilify, Trazodone. Is there enough Potassium in their system.

In all honesty, I was against medications but the elderly oftentimes a little boost of serotonin inhibitor can make a difference. My mother was statue-like now she can walk around and carry-on a conversation.

Music of their era calms them and oftentimes brings them back to earth!

Depression is not always from being sad but from not having enough inhibitors to the brain.

I keep blood draws and invasive testing to a minimum. Mom is frail and soon to be 84. I want her to be comfortable, safe, warm, well-fed and cared for.

Cranberry juice and water prevent UTI's. I think all of us want a pat hand and answers but it's different for every person. Mom has good days and bad days. It fluctuates.

I'm not a medical personnel but there is a specialist and test for everything. The CAT Scan is so they can compare any changes. But what would that do. What would you do any differently if you had that info.

I just cut and pasted this for you from Amazon but you may be to get it at the library but I think it's best to buy and keep the copy. I found it comforting. I bought the actual book not the kindle. But this is the title listed below.

Happy New Year!


Amazon.com: Dementia Caregiver Guide: Teepa Snow's …

Dementia Caregiver Guide: Teepa Snow's Positive Approach to Care techniques for caregiving, Alzheimer's, and other forms of dementia Kindle Edition. This simple, easy-to-read, 100-page guidebook helps family members, friends, and caregivers to better understand the changes that come with advancing dementia or other impairments in thinking, reasoning or processing information.
4.3/5(27)
Format: Kindle
Author: Teepa Snow

Many medications give the impression of dementia. Particularly the cholesterol lowering ones, narcotics, sleeping meds etc. Talk to the Dr about weaning him off all those that are not absolutely vital and then watch for change. Don't be afraid to insist on minimal meds and minimal intervention. The Lord has determined the number of our days no matter what we do.
Praying for you all..

My husband has a wonderful family practice doctor who listens.
Hopefully your husband does also.
I would discuss tests and/or specialists to rule out other causes of the dementia symptoms such as medications and/or infection ( or other problems).
My husband’s mental staus is finally improving after a long year fighting infection and a heart attack.
Sometimes “old age” or dementia is not the only diagnosis and ruling out other causes could improve at least quality of life.
I like the comment about the mother who came off medicine and said she had not felt so good in years.

Are they wanting to do the spinal tap to rule out hydrocephalus? 3 signs are memory loss, unsteady gait and incontinence. If that is the case, then a shunt can be placed. This is a risky surgery as well, but will help.

We decided to not do all these tests. How does that benefit the dementia patient or help us? I believe it just keeps the doctors paid. My mom was exhausted with doctor visits. We also took all meds away that were not life saving {with her geriatric MD help} and mom tells me “I have not felt this well in years”….just saying!. PS:there are no meds to fix this so what difference does it make once you have a dementia diagnosis?

I wouldn't subject my worst enemy to a spinal tap for something this minor.

What are you hoping to gain by knowing if it's Alzheimers or some other dementia? There are 70 types of dementia, but they all progress and patients don't improve.

Why does putting a name on it matter at this point?