MCI Diagnosis
My DH has been diagnosed with MCI after a fairly brief evaluation from a neurologist (with review of his MRI and bloowork). It appears that this is an umbrella term that could mean any number of things, so I'm confused about his actual diagnosis. I'm contemplating getting a more detailed neuropsych evaluation but hear that it's quite grueling and I'm afraid that my DH will refuse to go and/or refuse further treatment if too overwhelmed. Does anyone have thoughts about what MCI diagnosis means, and experience with psych evaluation?
I am concerned that he is actually further along than what we were presented, given his declining cognitive ability at home, combined with his exceptional coping skills when we are in front of doctors & nurses,
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Neuropsych testing is the primary means of diagnosis. It takes about 4 hours of testing.
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I understand how you feel hearing your DH's MCI diagnosis. My husband was diagnosed 6 years ago. At that time wasn't sure what it meant but have come to understand it is an often used term for people with cognitive impairment that is early on the continuum. It wasn't until several years later I've come to understand that is the label they put in it early. Many people who were previously diagnosed with MCI go on to develop dementia of one type or another. I think the medical field needs to get more evidence/data of declining cognition to be able to reliably make a dementia diagnosis. Hang on, it's a long, slow, bumpy road we are all on. The people with MCI are very good about appearing and interacting with professionals who may not realize the subtle changes we witness on a daily basis. I'm glad you found this site. It is a wonderful support group that has lots of knowledge, experience and understanding for you. Take care of yourself along the way.
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@brupt30
I don't know if this applies to your specific situation, but it is fairly common for neurologists to initially diagnose a patient on their first visit as MCI and then wait until the 6 or 12-month follow up to diagnose dementia.
That said, if your DH showtimes, the doctor may not be getting a clear picture. This is especially true if your DH is a lousy reporter, and you haven't been given a chance to discretely share what you're seeing at home. Dad's neurologist met with mom and me while dad did the quick assessments which allowed us to fill the doctor in without dad feeling like we threw him under the bus. At his geripsych and PCP appointments, I sat behind dad in sightline of the doctor so I could non-verbally signal whether dad's answers were true or not. I also used the patient portal to communicate with his doctors.
I would have liked neuropsych testing for dad, but his neurologist didn't feel it would bring anything to the party as his PET scans offered a lot of information. An amyloid PET scan or lumbar puncture can confirm Alzheimer's and would be needed if you're interested in the newer infusion medications.
HB3 -
In my case my DH was also Diagnosed with MCI, his Neuro Dr was a friend. He seen him due to a TIA and small stroke. He has never said anything other than MCI with no explanation. I guess not to worry him with a Dementia DX. I had to look at MRI and MRA, CT's reports etc…..and investigate myself to determine he has Vascular DM. In my case it was better, as he was a retired Perimedic, and I know he knows something is going on but he has said in the past he doesn't want to know. I made an appt and went by myself and paid out of pocket to get answers without my DH there. I do have medical POA so am able to do that, although the front desk at first said I could not. My DH now dose not even want to go back to the Dr because he stopped him from driving…
It helped me to know what kind of Dementia he has so you can research figure out where you are in the journey. My DH is in stage 5.
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I would keep a list of his behaviors and send them to all of his doctors at least monthly. Do not show your DH the list! He will deny it. Send privately to his doctors. Get your name on his chart at all his doctors. HIPPA forms need to be signed. Go to an attorney and get affairs in order. You will need Power of Attorneys. With a diagnosis he can apply for SSDI if they are not already on SS. Taking the 4 hour test won’t help in my opinion. It didn’t my DH. It only caused anxiety. After the test, the Neuro Psychologist called and said he should no longer be driving. That was a shock. Here’s a link that explains the MCI diagnosis https://www.alz.org/alzheimers-dementia/what-is-dementia/related_conditions/mild-cognitive-impairment#:~:text=Individuals%20living%20with%20MCI%20who,MCI%20due%20to%20Alzheimer's%20disease.
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My mom never had the extensive neuropsych testing. She was diagnosed with MCI by a nurse practitioner at a memory clinic. The problem with an MCI diagnosis is that doctors are reluctant to give a dementia ( moderate cognitive impairment) so they hedge with MCI even though the caregiver knows better. Diagnosis was done by a 10 minute verbal test, watching her walk and a CT scan. The NP never changed her diagnosis even though Mom declined. I eventually cancelled her appointment when nothing ever really happened there.
My step-dad did do the 2.5 hour neuropsych testing. Some testing was skipped because Dad only had a third grade reading level. I figured he would balk or get exasperated but the doctor was really good with him ( I was in the room). Dad actually enjoyed himself. We got the results a few weeks later - he never processed his diagnosis of stage 4 dementia (MCI is stage 3). He then showed his stubborn streak by refusing to go to the memory clinic
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Thanks - that's the first time that I've heard the term "showtime" and it accurately depicts how he behaves…I need to be much more assertive with his doctors so that they are aware of his symptoms. His previous primary care provider did not take any of this seriously.
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brupt30, my DH's doctor didn't take me seriously either but I knew something was wrong. Be assertive as you said. You are his advocate.
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My grandmother was excellent at showtiming, so what I did was intentionally bring her to her doctor’s appointment several hours too early. I blamed them for the change in her appointment time and took her shopping at the commissary while we waited. By the time of her actual appointment, she’d burned out her reserves showtiming while shopping. Within 10 minutes with the nurse and then doctor, she couldn’t pull herself together.
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Does this only apply to Alzheimer's or other forms of dementia? My husband was diagnosed with MCI 3 years ago but a recent MRI was within normal limits. But he is so much worse than he was 3 years ago!! I don't know where to go from here!!
husband
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@KayJH
I've seen people who were eventually diagnosed with Alzheimer's and Vascular dementia initially diagnosed with MCI initially.
Imaging doesn't always translate into what family sees at home. I would say the same for the quick screening tools like MMSE, SLUMS and MoCA. I saw my dad test on the cusp of MCI on MoCA less that 6 months before he died from complications of aspiration pneumonia. He could do serial subtraction but was incontinent and confused about where he was.
HB1 -
Thank you. It just shows how hard this disease is to diagnose! I'm up against that now as my husband's MRI was good and so DRs say he is good. I have been with him 50 years and know nsadly, he is not good.
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My husband was diagnosed as MCI 15 years ago. He had the 4 hour evaluation after having a seizure while driving and was told by the Dr to stop driving; that was 7 years ago. He was still rated as mci.
Now once he is approved by Medicaid he will be eligible for long term care. He still tries to show time. He had a brain mri last week that shows some white matter disease but everything else was ok. Even though he moved during the mri. These tests often don’t provide us with a true image of what we caregivers experience. He is now labeled as having dementia probably Alzheimer’s. He rates a 1 out of the 5 ADLs (eating). Lol 😂I found the Dbat scale by Tam Cummings most helpful in judging where he is on this journey.
Best wishes to you. Probably the best practical information you will find is on this website and at a local support group if available to you. ((((Hugs))))
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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