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Wanting to measure & document cognitive decline of spouse.

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OK. Suppose you have the best test to show you how much your LO has declined. What will you or can you do once you know the answer?

I know folks who put their LO through the stress prone MRI every year to gauge the decline. I personally see no need and no good coming from this process and I did not do it during the 18 years my wife struggled with the dreadful FTD decline.

I once asked a prominent neurologist about the value of repeated MRIs. She told me we only recommend it in cases where we suspect presence of tumors, or repeated strokes. And we use the information to decide whether surgery is required, or a change of medication is needed.

The best gauge for me for measuring the dementia progress was the capabilities or my spouse (thinking, doing things independently, needing help, logic, memory, cognition, stamina, etc.) which I was able to observe on a daily basis.
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Tmounsey56 Apr 18, 2024
I agree and frequently ask myself what's the point? My sister has seen two neurologists and had all the tests initially. No tumors, etc., and probably Alzheimers. I can see her decline with my own eyes and more info is not helpful even if they could provide it. Good answer Samad.
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Your eyes and ears, all the tests do not give you any conclusions, when will your LO get worse? No one knows, there are too many forms of dementia.

Journal and react/handle as needed.
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drbill88: An M.R.I. of the brain is the gold standard for cognitive function.
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Getting an evaluation by a neurologist is your most reliable method.
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One social worker told me " if they can tell time on a clock ." That is on One of the More extensive cognitive exams by a Nueropsychologist
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SLUMS test.

It is used to measure cognition levels in relation to diagnosing Alzheimer’s and dementia.

The test was used to measure my mother’s functioning and ability to recall basic information and instructions.

it is a sliding point scale from 1-30. Normal cognition will score in the 20’s.

My mom scored an 8 and was put into memory care based on the result because it confirmed a lot of behaviors that were otherwise undiagnosed. It made everything make sense.

it might be something that would be good as it could be retaken over time to track progression of scores.
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DrosieD Apr 16, 2024
Where or how do you get this test? My husband has Alzheimer's. He's seen by a neurologic nurse practitioner. I'm looking into VA placement for him. He's retired military with a 70 plus disability rating so I was told he qualifies for no pay.
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Contact: https://teepasnow.com - watch her videos, webinars, You Tubes, see her books. And, consult your beloved physician.

Who is Teepa Snow?

Teepa’s life mission is to shed a positive light on dementia. 
Teepa Snow, a dementia care specialist, and the Positive Approach to Care (PAC) Team share about dementia so that everyone can understand why changes are happening and how you can support those living with brain change in a more positive and respectful way.

When we know better, we do better

Thousands of people have joined our PAC Certified Community, 25 of those Certified Community members have become PAC Mentors, and 25 more are part of the PAC Team. 

Together, we stand with Teepa in her mission to change the culture of dementia care and decrease the stigma around dementia through affordable, and positive, educational training. 

PAC serves ALL people connected to those living with brain change and dementia.  We truly believe that everyone is doing his or her best, and that when we know better, we do better.

Teepa’s guiding beliefs are that we need to destigmatize dementia, help the world see how capable people living with dementia are, and to avoid doing things to or for them, but instead do things with them. Teepa has worked to provide people living with dementia the platform to be their own advocates, answer questions, and highlight how skilled, intelligent, and charismatic they are.
These wonderful people are willing to stand up and let us see what life has been like to live with dementia. Many of them join us for speaking engagements, certification courses, and champion courses. They invite questions so more people can learn, and this understanding helps break down these barriers.

This diverse group is made up of people of different ages, demographics, diagnoses, and personalities who share one common goal.
Let us break down the stigma surrounding dementia, let’s focus on people and relationships, and let’s work together.

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Gena / Touch Matters
(I did Teepa's webinars for 1-1/2 to 2 years. Excellent.)
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Sorry you, your spouse and several family members are dealing with, very tough.

Certainly, if other siblings have been diagnosed and you may see some decline in your spouse; it would be wise to get a full assessment from a specialist. First, it is important to rule out other issues (UTI, diet problems, perhaps Rx issues) is a key first step. Are the other medical issues which are causing the cognitive decline you see? Then ruling out psychological issues (depression, grief, etc.) as such conditions can mimic cognitive decline. Then once these other things are ruled out; brain imaging may be a good next step (is there an anatomical problem in the brain, such as "mini-strokes" or a "lesion?"). Once those things are ruled out, then do a full "neuropsychiatric" work up with a neurologist and/or geriatric psychiatrist/psychologist who will perform a battery of "neuro/psych" tests. These take about 2 days, a couple of hours each.

Even as a baseline, this is worth doing especially given family history. But it is possible that some other medical or psychological issues is really going on and which is treatable. That said, "mild cognitive impairment" or MCI is not uncommon among those over 60; and it may lead later to full blow dementia. Good to get the diagnosis (AZ or not?) as there are now some Rx meds recently approved by FDA for this "very early stage" of cognitive decline. The sooner one starts on the meds and earlier in the demential/AZ process; the better. Again, it may be something else.

ALL to say get a full neuropsychological workup after all the other things have been ruled out in order to be absolutely sure what is going on. That will allow you both to know and to make plans if in fact it is one or more types of dementia.

Sidebar: A dear friend had clear cognitive decline (age 74). She was convinced it was either AZ or Parkinson's (both run in her family). She resisted seeing a MD, was scared. Finally, after several falls and hospital admits; the hospital did braining imaging then as she hit her head on the way down and THEY FOUND she had "water on the brain." Her cognitive decline had nothing to do with either dementia or Parkinson's! After surgery to implant a pump and drain (yes in her brain) that removed the excess "brain fluid" SHE IS TOTALLY back to her usual self. Her type of "dementia" was cured! This may be one of the only or very rare types of "curable dementia" but she would have suffered permanent brain damage if she did NOT get those brain scans AND that pump/drain implanted.

Good luck with all of this.
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MissesJ Apr 19, 2024
Yes—I’m glad you brought this up. It’s called hydrocephalus and the symptoms can often be reversed with the shunts. It is a difficult diagnosis to get in the case of normal pressure hydrocephalus and a lot of permanent damage can be done by waiting, whether it’s from stalling going to the doctor or the doctors being slow to recognize the condition and implant the shunts.
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The SAGE test can be downloaded at no charge. A well-regarded neurologist specializing in cognitive decline developed it. Have the person take this test at home and share the results with the person's PCP (physician, nurse practitioner, or physician assistant).
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Drbill
If you look under your post you will see Alzheimer’s & Dementia, Cognitive Decline, Diagnostic Criteria.
You can click on one or all of these and learn a great deal.

I want to suggest however that you also look at grief and it’s affect on cognition.

Your wife is bearing witness to her siblings with dementia and while I would assume her risks are great with her family history, she could also be suffering from grief, anxiety, depression or fear with the terrible family losses she is experiencing. You might be feeling a bit of that yourself.

Good luck with the appointments.
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Go with your spouse to the doctor and take a list of things that doctor needs to know. Such as, how's he doing with his ADLs (can he shower by himself, brush his teeth, eat without help)? When was his last hearing exam? When was his last eye exam? What sort of dangerous behavior has he exhibited (trying to plug the wrong end of the cord for his shaver into a light outlet, wandering, becoming aggressive)?

Your observing and reporting will help a lot.
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The problem with the tests are, the results can be quite random depending on how they were on the day of the test. As we know, they can have variable days as far as level of dementia

As mentioned, someone who is regularly with the LO probably has a good general sense of how much they are declining over time
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Another human being who spends lots of time with the LO, all the testing in the world will not tell you anything that will give you the answer you are wanting.

Pay attention, adjust as needed.
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From the internet:
"Health care providers often use a brief test such as the Short Test of Mental Status, the Montreal Cognitive Assessment (MoCA) or the Mini-Mental State Examination (MMSE). More detailed testing may help determine the degree memory is impaired."

There will be many other suggestions as well, if you just google the issue.
I will tell you it is quite important, in this old retired RN's opinion, to get a good baseline exam from a neuro-psyc eval recommended by your own MD. When you go in with your hubby you can ask this question, as well.

Good luck.
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Geaton777 Apr 10, 2024
Yes, baseline is important to have.
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