My husband (84) has been battling dementia/depression for the past three years. He has an annual mri and neuropsychological test to see the progression. We were forced to change neurologists recently . So this year , I asked the new neurologist if they could identify the type of dementia and perhaps what stage he was in . They ordered a PET scan that was specific to reading Alzheimer’s. ( after months of waiting)
I was so looking forward to the results of the PET scan and it came back that they didn’t show any Alzheimer’s or other dementia . This result blew my mind ! He has gotten so much worse with both dementia and depression . Now they want to do a spinal tap to see if he may have some underlying condition that has made his symptoms so much worse so quickly .
I’m so tired of all of these tests. My husband continues to get more depressed and confused . Do I put him through a spinal tap or just stop trying to figure out what stage he is in .
I don’t know whether we are going through unnecessary tests.
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.
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 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.
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.
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.
"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.