Neuropsych testing

RayeMc

When your LO has received neuropsych testing, were you given a copy of the results? I was not told anything other than DH has mild cognitive impairment and this was reported to us by his primary care doctor. I somehow feel we are missing indepth information.

Iris L.

I got a copy if my results and the neuropsychologist spent a considerable amount of time explaining the results to me.

Iris

Quilting brings calm

If it was the 2.5 hour test, then yes, my step-father got his results at the neuropsych’s office. He also received a paper copy detailing results on all the various tests. My mom and I were given summary copies.

jfkoc

Yes, It contained the scores for all areas tested.

l7pla1w2

The psych sent us a copy of DW's report after I asked for a copy explicitly. It came with a cover letter that said the psych does not recommend sending copies of reports to the family. "The contents of the report were previously discussed with you at our scheduled feedback visit." Hmmph.

Vitruvius

Yes. I got a 14 page report detailing the cognitive testing and results of MRI, PET scan, and bloodwork including testing for the APOE gene.

Dunno

If MyChart or a similar platform is available, I would sign up. It seems that everything is also posted there for the benefit of other doctors who might be involved later on. Our Mychart site seems to be very transparent and descriptive, including notes and test results. I’m not sure how this works for others, but I also like that it keeps a history.

RayeMc

Thank you for your responses. I am definitely going to follow up with the neuro-psychologist and ask for a written report.

Belle

DH has been tested 3 times. The first two with our private insurance we got copies of the test results and met his neurologist to discuss them. The last test was with the VA and we met both with the neuropsych and neurologist but did not get a copy of the detailed results. It took over a half dozen requests and 21 months before they finally relented and gave us a copy. We needed it to compare to the previous tests and to give to his neurologist outside of the VA.

Getting on my soapbox for a minute I have no idea why they wouldn't provide that info. It's like telling someone they have high cholesterol but you have no idea if your LDL is high, your triglycerides are high or your HDL is in a good range. There are some studies I've read that showed that low scores in certain areas can point to a specific type of dementia. That can be helpful information for possible timelines, rate of decline (which is what we needed the report to see), etc. My DH's score in executive functioning fell by 1/2 between his last two tests. It's helpful for me to know that and make adjustments in our lives to make things easier for him. OK, I'm stepping off the soapbox now.

harshedbuzz

@KarenMc

I don't have experience with this sort of testing for my dad. His neurologist did shorter tests and explained the domains where the cognitive deficits were.

That said, my DS who is on spectrum has had extensive neuropsych and neuroeducational testing done. Typically, we would review the results during a meeting and then get a copy of the report 6-8 weeks later. Could that be the case here?

HB

mrahope

My DH had neuropsychological testing prescribed by the neurologist in our previous location. Tests were done a little over a year apart. We received copies of both reports in both paper and digital forms. We have attempted to put them in MyChart for other doctors to look at. To date, no one seems to have actually read them except myself and DH. He was a clinical psychologist himself and maybe understood more than I did, at least the first time around. I would say that if you do get the results, politely point out to doctors and other providers that they are available. FWIW, my DH's results from 11/22 said "consistent with mild dementia", but no doctors seem to have read them. YMMV

MN Chickadee

My mother's report was very detailed in each category and described how she scored and her deficits. It was helpful to see where she was processing well and where she wasn't to inform our communication technique with her and anticipate her needs in the near future.

PeggyLouGA

We had a follow-up appointment after the test to go over the results/diagnosis. We left with a copy of the findings also. Our primary care physician has been overseeing my husbands Alzheimer's treatment since and we are pleased.

midge333

Personally, I did not find having access to the report very helpful. It is used to establish the diagnosis of dementia and give clues as to the type of dementia. My DW was tested a year apart. She got worse and the second testing confirmed early subcortical vascular dementia.

l7pla1w2

https://alzconnected.org/discussion/comment/204379#Comment_204379

The neuropsych sent a copy of the report to DW's PCP and neurologist, who added a diagnosis of "Alzheimer's disease" to her medical record. That makes her angry every time she sees the diagnosis (in the online portal). Of course, I don't think the nseuropsych testing can positively identify AD. I just know she has some form of dementia, and I deal with the behaviors as they emerge.

WIGO23

I am right up there with you on that soapbox. There is no justifiable reason I can think of making one’s own health records difficult to obtain. It is your body or your cognitively impaired LO you are caring for and you need have a full understanding of test results (and a copy) is your right.

tucson anne

Like others, I have gotten some, but not all, test results over time. I think it's useful to validate what you are seeing in the changes and to look back over the history. Why, when you can get all your other test results for other diseases, some doctors don't give them all to you? Do they think you won't understand? Do they realize you've already been reading extensively about the disease(s)? I think we are still in the stage of male docs (how many of you have had female neurologists?) and the old patriarchal mode of doctor as the demi-god. Sigh

midge333

I agree people have the right to access their medical record including results of neuropsych testing. However, I think very few people other than PhD psychologists truly understand the testing and interpretation. I would venture a guess that most neurologists don't have a good understanding of the testing and base their diagnosis and recommendations on the conclusions of the testing psychologist.

jfkoc

The test will show exactly which areas are affected and the depth of the affection. It is really helpful information for the caregiver tohave.

wctraynor

I had to wait 13 months to even get in to see the nuerophychologist for my mom for the 4 hour testing. It would have been another 4 months to get the results follow up with him if I didn't request he just send to the PCP which took 3 weeks. The conclusion was Mild Cognitive Impairment but I had no idea what that meant or if it would turn into dementia eventually. By the time we got in to see a standard Nuerologist 6 months later, it was full blown Vascular Dementia mixed with Alzheimer's. Nuero suggested I go back to NueroPhych guy for reevaluation but couldn't get back in for 8 months. 20 minutes in his office again and he was like, Yep thats rapid progressing Dementia. We are looking at about maybe 1 year left.

We have to be full time advocates for our LO. There is no way she could have navigated any of this on her own.

RayeMc

As a follow up, I did contact the neuropsych asking for a copy of the test results. Bless HIPAA when practitioners don't or won't even use common sense. She did not want to send me my DH's results but I finally got her to agree to mail them to him (in hopes I get to the mailbox first). Why are things so difficult??

jfkoc

Karen…HIPAA is a good thing. Are you the named agent in a Durable Power of Attorney? I always carried that around with me. Never any problems.

RayeMc

https://alzconnected.org/discussion/comment/204619#Comment_204619

We had POA.s drawn up several years ago for both of us to be used when needed but to date I have been unable to get a physician to attest that it is needed at this point. I suppose I need to revisit this with his physician. It would certainly make life easier.

M1

absolutely, you need to activate the POA. If this doctor won't do it, find another one.