Neuropsyhology testing in Dementia

sunshine5

DH was diagnosed in last July, 21 and Neuropsyhology did Neuropsyhology testing.

The neurologist wants to

Do another test in September, 22.

Is this the right test to do ?

Will this show the decline?

Any thoughts?

Thanks 

60 falcon

It's just my opinion, but I'd say there's no point in doing it.  Your husband already has a diagnosis and you probably don't need anybody telling you if he's progressed.  The doc should have told you what the purpose of the additional testing would be.  If not, you should ask.  I'd never subject my wife to those dumb tests again.

JJAz

It's not uncommon to do further neuropsych testing a year after diagnosis, although it's often a shorter version.  The doc told us that it was helpful to determine the rate at which the disease was progressing.  My husband found the 2nd round of testing to be particularly depressing.

Pat6177

My DH’s PCP referred him to the Alzheimers Institute in town and turns out the doc he sees there is a geriatric psych. Big win to get him on my husband’s team before he has a need for meds for delusions etc. That dr wanted DH to get the neuropsych testing done again. It was originally done in 7-2020 and the diagnosis was mixed dementia (Alzheimers and vascular). The new doc said he wanted to see if the progression would still show mixed or not. I guess the testing showed clearly Alzheimers but his CT scan from a couple of years ago showed changes consistent with vascular dementia so that’s why that’s still part of his diagnosis. I didn’t contest the repeat testing since I’ve read on this site that it’s important to know what kind of dementia it is in order to accurately prescribe medications. But I had to reassure my DH that this was it and he wouldn’t have to do it ever again. The really sad part of it all was that when he came out of the testing he said to me “I wonder if they will find anything in the testing that will say I have to be institutionalized.” I have no idea where that came from but it broke my heart. I reassured him that he would be staying at home with me for as long as I am able to take care of him.

DrinaJGB

Over the years DH has been through this testing several times. It is long and grueling and exhausting. The last one was this past August which revealed mild mixed dementia.

 So the doctor who ordered the testing now has his diagnosis.

  I will never subject him to that again.

toolbeltexpert

DrinaJGB wrote:

Over the years DH has been through this testing several times. It is long and grueling and exhausting. The last one was this past August which revealed mild mixed dementia.

 So the doctor who ordered the testing now has his diagnosis.

  I will never subject him to that again.

I am sorry for you having to go thru this and if you don't  mind me asking. My dw has had problems since 2015 she has never been tested. You said the testing was long and grueling. Is this a battery of questions and how long does it take? It must have been very trying  for your DH, I hear so many talk about tests and they will never do it again, it makes me shy away from any testing. I did get her blood work when she went to a fast pace clinic. No issues. She gets a b complex everyday and has for many years.  I am sure someday she will need to be tested but she is already not showering like she should she hasn't  driven in over a year except once she got in the car and before  I could stop her she was gone. I panic drove trying to  find her, I got back home and she showed up didn't  know where she had been. I changed her keys with blanks. She is having problems with identifying  family names her short term memory is less than a minute at best. Sorry I am going on.

French

My partner had a long neuropsychological testing in dec. 2018 (many test s among which Moca at 17), before the diagnostic. After the diagnosis, he had only  only short ones, the MMSE that takes about 10 minutes.

For him, no use. For the dr and me, it was useful to validate that the disease was progressing fast. 

July 2019 MMSE=20

January 2020 MMSE =15

January 2021 MMSE = 12

October  2021 MMSE = 6 

The last one was not done by the neuropsychologist but by an expert from the court, to activate the kind of POA we have here.

I find it useful because we always have a tendency to underestimate the disease progress. The doctor also needs to know. I also found it useful to explain to others where we are, as they usually think you exaggerates. 

I am not sure I will ask another assessment as he has so few points to loose now. The ones he still has are about words finding. I know he is loosing more and more words.

sunshine5

What does MMSE stand for?

After the neuropsychological  test results, what action is taken, when they know the level of decline? I understand this test is 2-3 hours.

Is it worth having the 2nd test, we already know dementia will be progressing, memory decline!

DrinaJGB

The testing takes several hours. To expect a cognitively impaired person to keep attention span for a grueling half day or longer is absurd. Of course it will show deficits. Studies indicate that a NORMAL person's attention span wanes and wanders after only 10 minutes of lectures/information.instruction.

Frankly I think the doctors need to experience this testing themselves before ordering it for a patient.

As I have indicated before in earlier posting regarding this issue I will never subject my DH to that again.

As a foot note: Ironically, after his mixed dementia /possibly AD after the last testing this past August----he actually scored 3 points higher on MMSE this past week--scoring 26--which falls in the NORMAL range

 .(BTW--MMSE stands for testing typically done in a doctor's office "Mini Mental State Exam"---30 questions.)

  So much for definitive diagnosis. The whole scenario to me borders the comically absurd. As far as this entire dementia quagmire goes after 12 years of dealing with doctors, therapists, psychiatrists, neruopsychologists----you as the caregiver are pretty much totally on your own in navigating truth from projection and fiction. I liken it to trying to untangle a bowl of fish hooks. The more you try to get it resolved---the more you get stuck.Literally.

carry on- dj

French

The fist tests my partner did were 3 hours. But it was before the diagnosis, when we thought it was a burn out. 

After that he was only tested with MMSE which is about 10 minutes. Here is this test https://oxfordmedicaleducation.com/geriatrics/mini-mental-state-examination-mmse/

The neuropsychologist also ask questions to assess the depressive symptoms and here, he also has a discussion with the caregiver to assess the risk of overwhelming, depression…

For me it is a way for you and the doctor to confirm the progression. My partner never complained about the test when it was done by the neuropsychologist. It was always done without me so that he wasn’t observed. He complained when is has been done by the doctor from the court who assessed him for the POA activation, then he felt humiliated.

Rescue mom

The differences in testing are kind of interesting. When my DH got his Alzheimer’s Dx almost 4 years ago, at the area memory clinic, his tests were spread over several days, maybe 4-5, not consecutive. About 60 minutes per day, a bit longer once, and he said he got tired. Otherwise, he had no reaction/response to the process. He is just fine saying he can’t remember anything and/or “ask her” and/or “she does that.”

 (That test timeline does not include more physical tests like blood work and scans etc).

We have repeated several times (very abbreviated testing) and his scores dropped regularly. I doubt we’ll go again—he does not object, I just don’t see much point.

jfkoc

It is my understanding that the tests show areas of concern as well as progression. Is this correct???

Vitruvius

To partially answer jfkoc’s question:

DW was diagnosed with Semantic Dementia (SD), a uncommon FTD variant. We were given a 12 page report about the process used as well as meetings with nationally recognized neurologists, and neuropsychologists (they were interested in DW as a case study due to the rarity of SD). One thing they noted was that the SD diagnosis was reinforced by DW’s performance on the various tests in that she did reasonably well on non language portions compared to word related items in a way that is not seen in other forms of dementia.

Donr

My wife has been getting a shorter version of test every two years. The reason why I let her take the test is to monitor her progression. The test is around one hour or more.

sunshine5

What is the shorter version test called?

3 hours seems too long for a person already diagnosed with dementia 

storycrafter

My husband did not/does not object to the testing. The first time he went for a few hours about four times over the course of three weeks. He seemed to enjoy the challenge and looked forward to getting the doctor's analysis. (He was diagnosed with FTD seven years ago as a result of the testing comparison to previous results; has very slow progression, behavoral variant; is in middle stages and physically independent.)

The neuropsych testing was repeated last summer, a few years after the previous test, a shorter version and two visits. He found it more tiring and concerning this time. The doctor spent an hour with us regarding results and the meaning of them. It was helpful to know what areas had significant decline and a couple areas he did better (could be explained by the fact this time he was not in major crisis and was on long established doses of helpful medication).

The areas of most decline gave us info about the type of dementia and what meds to use. Being able to compare dh's results to his own previous tests (instead of a national norm of averages) is very telling re rate of decline and what kinds of things are helpful for me to be aware of. The results explained and validated the changes I'd been seeing. And the tips from the doctor were/are helpful in going forward to make it easier in communication/needs.

Every situation is different and the needs unique. If my spouse found it terribly upsetting we would not do it. I also would not have any hesitation in asking for a shortened, modified version of the neuropsych testing if need be. The results are interesting indicators of how various parts of the brain are working; knowing problem areas gave me clues for strategies in communicating better with him. That said, the testing appointments put it in-your-face and it's not easy looking dementia in the eye for very long. At this time and at the phase we're in, going to the final appointment to hear the results was stressful, but informative and helpful.

Wishing you good luck.