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

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?

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.

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?

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.

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.

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.

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.

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.

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.