What is the point of seeing a neuropsychologist?

Posted by crankyyankee @crankyyankee, Jul 9 8:52am

I have commented about this before, but have never asked that question. My 92 year old husband, dx'd in 2019 with mixed dementia, was referred to a neuropsychologist at Yale by the neurologist he saw initially. Ten minutes into the interview, my husband terminated it saying it was insulting to his intelligence and he would not continue. The neuropsychologist tried to get him back in track, but no dice, so we went home. He later called to offer any help we needed and I asked him whether the purpose exam was to help my husband or to advance research. He didn't give me a satisfactory answer about it being a help to my husband, so I wasn't regretful about the termination of the interview. Honestly, the best help we've had is from his geriatrician and especially the APRN in the practice whose mother has Alzheimer's so she knows what she's talking about. And these groups, online and in person. For a condition that can really only be managed, I cannot fathom how a 2 hour interview with someone who has never met the patient, not lived with them 24 hours a day for years, can help. His original neurologist suggested going to the senior center for socialization. My husband's primary care doctor (for 20 years) would have known that he wouldn't have done that BEFORE he developed Alzheimer's, so taking him into a situation like that would only be stressful, it seems to me. Am I being defensive? I don't think so. I do not regret for one minute the way I'm shepherding my husband along this journey, paying attention to where he "is" on any day, hour or minute and adjusting appropriately. I guess it bothers me that caretakers may be being given false hope - that a neuropsych exam will somehow change the trajectory of the disease. Interested in hearing rebuttals to my assessment of the exam. I'm open-minded!

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@centre

My husband’s PCP recommended neuropsych testing when he complained of memory issues. He enjoyed the testing, I read the report online in the patient portal and the conclusion was MCI. I was astonished as it just seemed like memory issues related to aging, but I was in health care and knew MCI invariably leads to dementia, so I started being more observant and making changes for the future (finances, home safety, etc). Eight years later, while in the hospital, the hospitalist recommended repeat testing after discharge. My husband went, enjoyed it again, same examiner, same testing. The data showed a clear and marked decline. I used that info to become more serious about planning- updated wills, advanced directives, putting the car titles in both names, elder law attorney consultation, return to the state of his drivers license in exchange for a state ID card, reaching out to the VA to see what services might be available, etc.
I am very grateful to the neuropsychologist who did the testing, explained the data, and opened my eyes to what was going on and what I needed to do to prepare us for the inevitable future. Before the second testing, I was the proverbial frog in the water, making what I thought were little adjustments here and there and not realizing how much his cognitive status had deteriorated.

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What a good experience you had!
We were given that information by his geriatrician who sees him for an hour (really!) every six months, so it seems like the neuropsych exam would have been a more precise evaluation, but in the end, we got to the same place without what was clearly major agitation and distress for my husband.
We are 13 years apart, so many years ago our financial advisor had us get our financial and legal ducks in a row, presuming that he would die before I would. Alzheimer's was not part of the equation at that point, but we're glad the advisor facilitated setting everything up. (The only issue now is that his health care directive says 'no code', but he has recently said he wants full code. Save his life even is he has a terminal disease. No matter what. A kind doctor during a recent hospital stay told me that, in the end, it will likely be up to me [with POA], because he, as a dementia patient, cannot make a fully informed decision. I mentioned this at a caregiver's group I belong to, and other members already knew this.)

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@crankyyankee

Great answer!! I guess I just don't think it would have made any difference in his treatment. It's a bit like Tetris: fitting the piece that just dropped, into today's place in the puzzle and then waiting for the next piece to drop and dealing with that.

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Great question AND response.

My dr also suggested I see a neurologist. While it is needed for documenting the downhill trajectory of my illness, they already missed the years where value might have come as a result of seeing a neurologist.

By the time it’s suggested, that ship has sailed.

There’s nothing a neurologist can do for my condition.

With no official diagnosis, I’ve been unable to thrive and had to move home at 60 while waiting for my disability denial again even tho I’m only able to earn 12k a year with this condition.

A neurologist can’t do a dam thing to change my past or future besides keep track of faltering abilities and my regular dr can do that.

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@laurie6

Great question AND response.

My dr also suggested I see a neurologist. While it is needed for documenting the downhill trajectory of my illness, they already missed the years where value might have come as a result of seeing a neurologist.

By the time it’s suggested, that ship has sailed.

There’s nothing a neurologist can do for my condition.

With no official diagnosis, I’ve been unable to thrive and had to move home at 60 while waiting for my disability denial again even tho I’m only able to earn 12k a year with this condition.

A neurologist can’t do a dam thing to change my past or future besides keep track of faltering abilities and my regular dr can do that.

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Exactly! Sending compassionate hugs. I'm glad to know I'm not they only one who has had this reaction to neurologists. Mind you, my husband's neurologist is top notch, very kind, very willing to listen, but he's kinda become irrelevant. As you couldn't, your regular doctor can do that. (So can APRNs, if they're in the primary practice. I love APRNs for their straight shooting.

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My wife went through two 2 hour sessions (zoom) back in 2020 because it was recommended by her Neurologist. I was in the next room so I could hear the questions and my wife's answers. The diagnosis was she had MCI. Not a great surprise, because my wife left her job in 2012 because of memory issues. There were no recommendations that could help us in any way. She sees her Neurologist every 6 months and sometimes he recommends a new medication but 90% of the medications are either useless or they have very bad side effects (running away in the middle of the night, sick. etc). The Neurologist does not recommend another neuropsych test because it will not show anything we don't already know. My impression is it's a one time test to help clarify the diagnosis. Love your name

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@tunared

My wife went through two 2 hour sessions (zoom) back in 2020 because it was recommended by her Neurologist. I was in the next room so I could hear the questions and my wife's answers. The diagnosis was she had MCI. Not a great surprise, because my wife left her job in 2012 because of memory issues. There were no recommendations that could help us in any way. She sees her Neurologist every 6 months and sometimes he recommends a new medication but 90% of the medications are either useless or they have very bad side effects (running away in the middle of the night, sick. etc). The Neurologist does not recommend another neuropsych test because it will not show anything we don't already know. My impression is it's a one time test to help clarify the diagnosis. Love your name

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It is certainly a test to clarify cognitive dysfunction. For me, as someone with a recent diagnosis of mild cognitive disorder, I will repeat annually to document the rate of disease progression. It is not treatment per se. But the Neuropsychologist did also recommend some strategies for assimilating the diagnosis.
I had a test for my genetic predisposition for Alzheimer's and a blood test that documented the presence of Alzheimer's disease by measuring Tao and Beta Amyloid levels. Finally I had an MRI to evaluate whether I have lost any brain volume.
So its a complex baseline and since I live alone and like it, over time the periodic updates will allow me to time when I will trigger various decisions such as turning over my car keys, or removing all my candles (which I love), or ultimately moving to an assisted living facility.
So my path likely isn't anyone else’s but i always choose more data over less in my decision process.
My hopes for you and your wife going forward.

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Thank you for your comments. I feel like people look at me like I have 3 heads when I pose this very question.
I heard about an "adult daycare" program near me from someone in a dementia support group. I took my 74yr old husband for an assessment, which showed severe dementia. This was simultaneously shocking and validating. He goes 3 days per week. The first two weeks he complained that they were all crazy and messed up. Now he enjoys it! He's not the same man he used to be. They meet him where he is today. He feels safe and supported, and comforted by the routine. I'm taking his to his neurologist this week for the first time since Jan 2023. I need a letter from him so that I can activate my POA for financial matters. Otherwise, I'm hoping for some advice on whether he is ready for memory care. I don't expect a definitive answer.

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This is a short definition of what a Neuropsychologist does:
Neuropsychologists are trained to assess, diagnose and treat psychological conditions with brain-based conditions (e.g., DEPRESSION, ANXIETY, PTSD), Neurodevelopmental conditions (e.g., AUTISM and ASPERGER SYNDROME), Educational issues (e.g., DYSLEXIA, DYSGRAPHIA, IEP/504 accommodations), Neurodegenerative disease (e.g.
DEMENTIA).
I personally have not heard of this specialist before but when my husband had depression, we made an appointment with a counselor who was not trained in the knowledge of diseases such as Dementia. He did get better, but if he is depressed again, I would want him to go to a Neuropsychologist, because we know he has Dementia but what is he suffering psychologically? I see what my husband is going through because he is aware of what Dementia is doing to him and he gets very despondent when he can’t do what he wants - and worse, he knows there is no cure. I believe mentally it is horrendous for him and others to have to face the fact that they are sick and life for them will never be the same. They are afraid because life is changing for them and they don’t have any control over it.
Instead of them living their “Golden Years”, they will eventually not know where they are, who you are, not even know themselves. They will end up only being able to lie in bed and sleep. So the psychological aspect of Dementia is just as important to me as dealing with the caretaking of his Dementia.

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I just was told by a neuropsychologist that you can have MCI and Alzheimer's simultaneously. Also, he said that highly functional individuals can score perfectly on the 30 question test and still have Alzheimer's--which explains why I had to fight with the neurologist to be referred for testing. Even Stanford told me I scored "exceptional for a person of my age" and said I was told I would never get Alzheimer's even after 3 different years of testing when I knew I was declining. It was a waste of many years of neuropsychological testing. But, you need a diagnosis for insurance coverage. It took the scans to change the conversations. Yes, it is depressing to learn you have dementia, but I found it comforting to get a firm diagnosis. I am also comforted by knowing that I will not lie in bed for years before I exit this life. The US states that allow 'death with dignity' unfortunately require a max of six months prognosis until death and that you are coherent enough to request assisted death a couple of times before they okay it. Next week I am going to Switzerland to check out Dignitas which doesn't have the catch 22 limitations that exclude individuals with dementia. Unfortunately, the travel costs and fees are expensive. But I will not lay there for years and die the painful for all deaths that my mother and grandmother did. Good luck and best wishes to all caregivers and patients who suffer.

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@davejr

I just was told by a neuropsychologist that you can have MCI and Alzheimer's simultaneously. Also, he said that highly functional individuals can score perfectly on the 30 question test and still have Alzheimer's--which explains why I had to fight with the neurologist to be referred for testing. Even Stanford told me I scored "exceptional for a person of my age" and said I was told I would never get Alzheimer's even after 3 different years of testing when I knew I was declining. It was a waste of many years of neuropsychological testing. But, you need a diagnosis for insurance coverage. It took the scans to change the conversations. Yes, it is depressing to learn you have dementia, but I found it comforting to get a firm diagnosis. I am also comforted by knowing that I will not lie in bed for years before I exit this life. The US states that allow 'death with dignity' unfortunately require a max of six months prognosis until death and that you are coherent enough to request assisted death a couple of times before they okay it. Next week I am going to Switzerland to check out Dignitas which doesn't have the catch 22 limitations that exclude individuals with dementia. Unfortunately, the travel costs and fees are expensive. But I will not lay there for years and die the painful for all deaths that my mother and grandmother did. Good luck and best wishes to all caregivers and patients who suffer.

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PS: I am taking Aricept and have changed my lifestyle so that I can last as long as I can with dear friends and family before I go. Life is certainly a challenge, isn't it?

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Back when my cousin developed cognitive decline pretty quickly, my goal as her HCPOA and next of kin, was to determine what was causing it. There are some treatable conditions like pressure in the brain, tumors, etc.

Her primary diagnosed her in her office visit after an exam and mini evaluation with vascular dementia, I asked for a referral to a neurologist to confirm and he ordered an MRI. Based on his office eval and examination, he diagnosed her with severe vascular dementia. She had a positive Babinski reflex at that visit. I was shocked. She was only 63 years old!

The assisted living facility counselor strongly encouraged me to get her evaluated by a neuropsychologist. I found out the details of the 3 hour evaluation and decided that enduring that, plus the 2 hour travel time was too much for her. By this time she was in a wheelchair, incontinent and not able to answer many questions. I failed to see what that evaluation could do to help. Memory Care was very helpful.

I think that for some people the neuropsychological evaluation could be beneficial, but if the dementia is pronounced and the cause is known…..I don’t see the value. But, it’s up to each family. Some people have difficulty accepting the diagnosis and maybe, this would be a way to understand their loved ones particular deficits.

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