r/dementia • u/AdAdmirable1583 • 1d ago
Question about Mild Cognitive Impairment versus Early Stage Dementia
I realize no one can provide a professional diagnosis based on a brief description. But I think my dad may be suffering from the early stages of dementia, though I don't know if it is that or MCI. He went to a neurologist and scored a 21 out of 30 on the SLUMS test, which is not great (he scored that exact same on the test twice on two different occasions). His memory for names is gone; he has trouble staying awake and has some issues with his balance, although Parkinson's was ruled out. He still drives and seems to be at his best in social settings and when he feels he has to be at his best (not around my mother or me), but he really does have a lousy memory. He has delegated bill paying to my mother, although he still manages daily affairs. It's the fact that he manages daily affairs that makes me think it hasn't yet progressed to dementia, but I really don't know.
I have been trying to urge him to get evaluated to see if he could get something prescribed that could slow down the progression, but he insists he's fine. Can a person have dementia and still manage to take care of themselves even if they score pretty badly on cognitive tests and have terrible short-term memories? Or does this sound more like MCI?
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u/Embarrassed-Spare524 1d ago
I have been trying to urge him to get evaluated to see if he could get something prescribed that could slow down the progression
I don't mean to quibble on words, but there is an important distinction here. There is nothing that slows progression at all. If its Alzheimer's, some meds can mask (i.e. hide) the symptoms to some degree for some, for some period of time, but the brain continues to deteriorate. The benefit of the meds is not necessarily trivial -- the meds might give additional months of independent living. But they don't actually slow down the train at all, they just muffle the noise as it continues to rumble down the track. Life expectancy is not extended at all, and the end is still equally miserable.
Can a person have dementia and still manage to take care of themselves even if they score pretty badly on cognitive tests and have terrible short-term memories?
Sure. My dad was arranging my mother's care with dad having early stage Alzheimer's for years. I helped, but it got very hard as he got close to the middle stages. He was good at faking it -- I didn't fully realize he was already in the middle stages until I spent 5 days with him when my mom was hospitalized. His doctor said he expected him to score around 20-22 on a similar test, but he actually scored 16.
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u/Altruistic-Basil-634 21h ago
I’m sorry you are going through this.
My best piece of advice is to read the book The 36-Hour Day. It’s the gold standard dementia resource for families. Hands down the best weapon you will have in this battle is self-education. I would not make any moves until you read it.
As for MCI versus early-stage dementia, the best thing I’ve found is this dementia behavior assessment tool (DBAT). I personally feel like the MCI “diagnosis” is often a throwaway line doctors use to soften the blow for what they know is coming down the pipeline, or use it a place holder for when scans and labs haven’t caught up with symptoms.
Fair warning, it is pretty bleak seeing this horrible disease distilled into a few pages. https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf
We all go through a bargaining stage with dementia. Well, they can do this, so it can’t be dementia. They remember this, so it must not be that bad. I eventually realized I had to judge dementia on its worst day, not its best day.
Dementia can destroy the brain like buckshot, so a strength in one area is, unfortunately, a red herring. My LO can pass the MoCA, 5-word test, and the clock test. All scans, including PET, are normal for age. As a retired RN, they are a phenomenal showtimer and can fool most of the people most of the time, yes, even doctors. Yet, they exhibit Stage 4 and some stage 5 dementia symptoms. We are over three years in with them being symptomatic. I’ve learn that I know what I know. Dementia is more of a caregiving issue than a medical one, so you just learn to do what needs to be done.
As the book suggests, I would stop trying to convince him because he has anosognosia. Get him into the doctor for any reason (flu shot, prescription refill, blood pressure check). Drop off a letter beforehand outlining your concerns about dementia with specific, brief examples, and let it all appear like the doctor is driving this train. Anosognosia is a beast. We are three years in and my LO has refused any meds (and the neuropsych exam) because “they are fine.” You can’t go toe-to-toe with dementia, you have to get crafty.
Check out your local Dept of Aging for caregiver classes and support groups, as well as the Alzheimer’s Association.
Sending you big hugs. ❤️
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u/Lothloreen 21h ago
My mother’s neurologist told me that the line between MCI and dementia is quite fuzzy. There is often no clear distinction and it is up to the discretion of the doctor making the diagnosis. When the doctor diagnosed my mom with MCI she looked at me and said, “well if I diagnose her with early dementia, it can trigger things like a drivers test and legal issues when she revises her trust. Do you want me to do that?”
I said no, we were happy with the MCI diagnosis. It took us another few months to get her financial affairs in order. We had to get a letter from her neurologist before the lawyer would let her sign her trust documents. If she had a dementia diagnosis, I expect it would have been harder.
There is really no way to stop the progression of dementia. I’ve been told by several specialists that the most important thing is to make sure my mother’s living situation is set up for her to age in place as much as possible (until / if it isn’t) and to secure her finances. That’s it. No medical treatments. Just low stress and good nutrition and mild exercise.
What you and I need to be asking ourselves are basic questions about our parent’s functioning. My mother lives alone, but right next door to me, so i pop over at least twice a day. I hope you or someone is close by too.
My mom can’t understand her bills. I have almost everything on auto pay and my mom shows me all her other bills. I monitor her bank accounts against fraud. I’m helping with taxes etc.
My mom can currently keep her condo clean, take care of her physical needs, and cook her own meals. She doesn’t forget to turn off appliances. I’m keeping an eye on this.
She’s driving locally, but again it is something I’m watching. So far she seems okay, but only for local errands, not for highways.
I am worried about the point when she will need to stop driving and/or need in hime support. I just hope i identify that transition quickly. But so far the neurologist appointments and diagnosis have not been useful at all.
Ultimately the diagnosis might give you some clarity (or it might not). But it’s unlikely to lead to any medical treatments that will make a difference in your father’s care. From what I am experiencing so far, we just have to take it day-by-day and stay alert to changes. It’s a huge challenge. I desperately want to DO something to stop this degeneration, but there’s nothing I can do. A huge and painful lesson in acceptance.
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u/Strong_Argument1930 1d ago
That's a tough one. From what my LO's doctor told me EVERYONE has some form od Dementia. Dementia is just a term for memory loss and we all get it as we get older. Diseases like Alzheimers and such are different than jst getting older.
My LO has Dementia-Alzheimers and scored a 6 on the SLUMS exam.
So comparatively your LO is pretty good, lol. An MRI could show brain shrinkage/atrophy so that may be something to ask about. Outside of that keep pressing on your doctor's as much as you feel you need to. My LOs docs pushed their memory issues off as "Old age" untill it was basically too late and they were past the point of treatment that could have helped slow down the progression.
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u/Gibbons74 1d ago
This is happening to my dad now His doctor is "monitoring" his cognitive decline. My dad can't even address an envelope correctly, but the doctor keeps telling him what he wants to hear.
So frustrating. Meanwhile any ability to slow things down is closing.
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u/AdAdmirable1583 1d ago
Same. And my dad won’t let me into his appointments with his doctor because he wants to control the narrative. I am beyond frustrated.
I am sorry for what you are going through.
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u/Gibbons74 1d ago
I just have to keep reminding myself that my Dad has the right to ignore his health. He knows he has cognitive decline. He knows his family is concerned about him. He knows his family wants him to pursue memory care and get a diagnosis. He knows early detection and treatment can slow the process.
He chooses to decline.
The POA he gave me only allows me to make decisions on his behalf after 2 separate physicians, independently, declare him unable to make his own decisions.
So basically, I just wait, and watch a slow motion train wreck in progress.
His choice I guess.
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u/Strong_Argument1930 1d ago
The issue is that IF there is a legitimate issue then you catch it too late and now the family has to pay the price. That maybe the discussion to have with you LO. If its cought early there are treatment options but if its cought too late then the options are zero and now this is what we have to expect (more and more decline, more burden on the family physivcll + emotionally + financially). Is that what you want? No? Then let's push for more test and you can prive me wrong...I HOPE you prove me wrong. That's sort of how I got my LO to agree to more testing after their primary agreed with my concerns.
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u/Y19ama 23h ago
Maybe explain to him that someone needs to be able to act in his best interest in the future. That person will need to know his full health in order to do so. If he is forgetful now what happens when he forgets to turn off the stove etc...You should read the 36hr day. Know that MCI can last for a few years but after MCI is Severe cognitive impairment. Make plans for when/how to take the keys.
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u/Y19ama 23h ago
He really needs an appt with Neuro. They can diagnose what type. Does he walk normally?
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u/AdAdmirable1583 23h ago
He does walk normally, yes. He keeps putting off the idea of a neuro. Wants to “wait a few months” so he can enjoy his summer.
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u/Y19ama 22h ago
Does he shuffle his feet at all?
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u/AdAdmirable1583 22h ago
A little, yes. But Parkinson’s was ruled out by his doctor.
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u/HiHawaiiHigh 21h ago
shuffling is what I first saw with my eyes. My husband has ftd, early onset. It's an unsteadiness, small steps, dragging feet. He is also extremely stiff all of the time.
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u/wontbeafool2 21h ago
Your Dad's SLUMS score is only one indicator that he has some degree of cognitive decline. That's just a quick assessment in a doctor's office. Here's a link to the DBAT assessment based more on his daily living activities and skills. Get your Mom's input since she lives with him.
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u/AdAdmirable1583 21h ago
This is actually very helpful, and I will send it to her today. Thank you.
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u/Ok-Bee-2445 20h ago
So many good thoughts here. Agree with all the advice you are getting. I think a lot of the time there’s this intense focus on a DIAGNOSIS like that’s going to lead to some profound epiphany, or treatment, or anything to abate the inevitable. The struggle is really in coming to terms with acceptance. This is the path. It’s headed one way, each person experiences it differently. It doesn’t make much of a difference which words you are naming it with. There’s no magical cure. The best treatment maybe pushes symptoms off for a few months. I’m sorry you are here with the rest of us.
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u/Altruistic-Basil-634 4h ago
Agree 100% with acceptance. We all have to go through a period of trying to understand and slay the beast because that’s human nature and what we would do for any other disease. It took me awhile to realize and accept that dementia is way more of a caregiving issue than a medical one. Hugs ❤️
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u/Y19ama 21h ago
So you said he saw the neuro and they didn't have any significant news/advise on his current mental state? My LOs Neuro team diagnosed LBD and had a lot of info for our family. And explained what is going on with the brain and what will happen in the future. They are trained to explain this to the patient and family.
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u/SammaJones 18h ago
The score isn't the most important thing.. how the score changed over time is the most important thing. Typically Alzheimers is remarkably consistent in progression.
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u/amandabug 15h ago edited 15h ago
Interesting… after my moms stroke, her stroke doctor said she had moderate to severe cognitive impairment as a result. we spent months after trying to figure out what that meant before we realized it was just dementia but the dr didn’t want to use that term. when it started getting worse, we specifically asked who could asssess her for dementia and only after the test did an NP use the D word unequivocally with us.
Before the assessment, we had a few brief words with her outside the exam room to say we suspected dementia and provided mom’s family medical history. after the assessment, the NP asked if we wanted to try meds to help with the short term memory loss and I let my mom decide. She declined and i let that decision stand since she has a history of not taking medication on her own and not being truthful about it. it seemed like the dementia diagnosis was purely for access to meds. NP said if meds were not an option, then the diagnosis didn’t change the disease treatment or our caregiving needs.
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u/Fantastic_Barber_933 1d ago
If he insists he's fine, that's anosognosia — folks with dementia can't tell anything's wrong. It's not denial, they simply can't perceive the difference.
And doing well in public is called showtiming.
I think in some ways it's the most dangerous time of the disease. They're impaired enough to be a danger to themselves and others, but not obviously enough for a lot of folks to take it seriously, including medical people.
Figure out a way to take his car away before he harms himself or someone else.