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

Are the neuropsych exam results remaining stable or is there progression of his cognitive loss?

Overall, are you happy with your husband’s neurologist? If you aren’t and there are other options in your area, consider switching to a new doctor.

Maybe a fresh pair of eyes will help. I have changed doctors when I haven’t been satisfied with their quality of care.

A spinal tap can be used to help diagnose AD. Also could help rule out another cause. You might want to Google 'Alzheimer's' + 'spinal tap'.

Some information here:
https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/normal-pressure-hydrocephalus

I found a Neurologist, after the initial diagnosis, to be about as useful as "tits on a bull"
The only one that gained anything from the subsequent visit..and there was only 1..was the doctor when he got the co-pay.
Now I did get my Husband in a Drug Study and he did have a spinal tap ONLY because of the study. I would not have put him through it if it was not necessary.
As he declined I would not have subjected him to any testing as that would have been difficult to do as he was not compliant and he would have had to have been sedated and that would have made the dementia worse.
Stage....You know where he is by your every day observations. You can look at any number of charts that list the stages and highlight what he still can do and what he has lost. there is always going to be items on the list that he can do longer, some items he will lose sooner than "average" but it will give you an idea where he is.
What I would encourage you to do is contact a Hospice in your area, as a matter of fact contact more than 1. Have your husband evaluated and take full advantage of all that Hospice can offer in the say of supplies and equipment.
And if your husband is a Veteran contact the local Veterans Assistance Commission and find out if he would qualify for any services from the VA.
I would not have been able to care for my Husband without the help of both Hospice and the VA.

I have never heard of getting an MRI yearly to track the Dementia. I would have had one done to determine if there was Dementia/ALZ and what type and it was confirmed Dementia was in the picture, there really is no need for another IMO. You can tell by living with someone that the disease is progressing. And it does, some slowly, others faster. Decline can literally happen overnight.

"Magnetic resonance imaging (MRI) is often considered superior to CT in dementia imaging [2], in particular for demonstrating vascular lesions and for identifying additional pathology, e.g. microbleeds and white matter lesions.May 2, 2019"

"What can brain scans tell us about dementia?
The two characteristic changes in the brain of people who have Alzheimer’s disease are clumps of toxic proteins called amyloid and tau."

I am not a Nurse or a doctor but I would go with the MRIs in reference to ur husband. It seems Pet scans are more for looking for ALZ than other Dementias. So, ur husband does not have ALZ. I don't know about putting him thru a spinal tap. They have to be awake and are given a local. They have to remain very still. Can your husband follow directions?

I may do the spinal tap for peace of mind. But after that I would not put him thru anymore tests if the spinal tap shows nothing. If husband is not on depression medication I would ask that he be placed on it. Dementia itself may run its course in 5 to 7 years. My Mom lived 6 years from diagnosis. ALZ is longer, my Aunt lived 12 yrs from diagnosis.

So sorry you are going thru this, but no one can tell you how long a person has with Dementia.

To do an invasive test like a spinal tap to check for conditions that haven't appeared elsewhere seems ludicrous to me. My mother had progressive dementia that was diagnosed ONLY with a SLUMS test and nothing more. Her neurologist was such a waste of time and money, that I fired her after 2 visits in the hospital and refused a follow up visit after mom's release. She flat out told me there was NOTHING she could do for mom's dementia or her neuropathy, but here's my huge bill, thank you very much. And then had the nerve to act shocked when I told her I would not be needing her services in the future, thank YOU very much.

In reality, there's nothing TO be done for dementia except prescribe anti depressants or calming meds for mood issues.

Do whatever you feel is right but don't put your poor husband thru painful and invasive tests for the likelihood of more inconclusive results. And if AD is diagnosed, what's to be done for it anyway? And if this neurologist is wondering why he's gotten progressively worse lately, does he not understand that dementia GETS progressively worse and rarely shows up on ANY tests other than cognitition exams??????

Best of luck.

The short answer to your question is no, you shouldn't keep putting him through these tests. And who cares what "stage" he's in? You already know he has some type of dementia, and even though it may not be Alzheimer's(which you should be grateful for as that can go on for up to 20+ years)there are many many more types of dementia.
The simple fact though is that your husbands brain is broken and will never get better only worse, and you now have to figure out the best option for his care.
People with a broken brain don't like their routines disrupted as I'm sure you already know and dragging him to this doctor and for this test only makes things worse for him and you. There are no medications to stop or slow down the process or to cure it, so why continue to put him and yourself through this?
Instead educate yourself best you can on dementia, so you will be better prepared going forward, and then start getting your "ducks in a row" for his future care.

When my late husband was diagnosed with vascular dementia in July 2018(even though he showed signs a good year before)and at that time given a life expectancy of 5-7 years(it has since dropped to just 5 years)I knew that I would no longer put him through any unnecessary tests or appointments again and would try and make his time left here on earth as pleasant as possible for him, as he deserved that much, and so did I.
My husband was under hospice care in our home for the last 22 months of his life and died Sept. 2020.

I wish you well on this journey with your husband. God bless you.

PET scans are the “definitive” test for AD. A radioactive compound is injected into the patient which binds to the amyloid plaques and “lights them up”, thereby verifying the presence of the plaques. The plaques along with tau tangles are telltale biomarkers of AD. An MRI can detect vascular issues and also abnormal shrinkage of the brain, a sign of possible AD.

Now forget what I just wrote. Some people who show signs of dementia symptoms and possible AD, have no accumulation of amyloid or tau buildup. On the other hand, patients who have significant buildup of those proteins, may have no cognitive decline. So someone showing noticeable cognitive decline, may show no amyloid deposits on their brain from a PET scan. That may be the reason for your husband's negative scan assuming he's been evaluated for all the other dementia causes.

I don't see how annual MRI's and screening will help your husband. You know you're dealing with dementia of some kind, and you know it will get progressively worse. A spinal tap may be worthwhile if they are looking for an underlying condition not related to dementia diseases. I wouldn't rule it out. After having an MRI which showed normal shrinkage for someone her age, and an all-day neuropsych screening, drs could not tell me what the cause of my wife's dementia was either (although I suspected AD). Her death certificate read “dementia”. So I would forget the stages and even the cause and just do your best to address his symptoms as they come up.

Don’t do it. As others have mentioned, why? We know our loved ones are spiraling downward every day. Dementia patients have a terminal disease. Trying to help them understand invasive and other tests is a huge task in itself. Enjoy each day with them and strive for the best life they can live on this day.

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?

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?

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.

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.

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..

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

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.

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.

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.

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.

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.

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.

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”.

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.

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!!

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.

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

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."

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.

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?

***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?