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This is an administrative question, I think. I am looking for an article about a dementia patient who scored very high on a memory test given at the neurologist ‘s office yet continued to show symptoms of dementia.


This just happened yesterday with my sister.


She has a “boyfriend” from her Bible study group (he is a retired pastor to seniors) and thinks she is getting married this summer even though he has not proposed. We have not even formally met him yet. I go to a different church.. Yesterday she scored very high on the memory test (even the neurologist was surprised). Ideally, it would be so good to just let her get married, have my sister change my POA (medical and financial) to her new husband, but I see obstacles ahead. I see ethical and moral questions about not revealing her true condition. My dear husband wants this “marriage” to happen, but I can’t hide the truth.


Anyone have thoughts or ideas on this?

My mantra and latest major life wisdom (I'm 66+ now) is "life's not for sissies". We must go boldly; you and your husband's feelings are both authentic and valid; there is no such thing as 'right or wrong'.
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Caregiversister May 4, 2021
Thank you for your answer. Yes, my husband’s viewpoint is valid, and I can see it as a possibility. I’m in a neutral position right now and am letting events lead wherever they will. Only when I see danger or risk will I consider if I need to say or do something.
Being neutral about this is better than being anxious like I was earlier. 🙄
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We had something similar happen in our family. My uncle who was only very mildly impaired and not yet dx'd with Alzheimers fell in love and married someone who was better off financially. They had a few fun years but when it became obvious that he had Alzheimers they split and he moved back in with his sister. The two of them remained friends and my uncle said it was a 'business decision" as much as anything else because the burden for caring for him would have impacted his new wife financially. I'm sure that is true but I actually think that was her way of just getting out of the mess and the burden.

But they had a few good years and why deprive your sister of that (if this guy is really interested in marrying her)? It sounds like she has no money to be scammed out of. Maybe they should just live together (too scandalous for a pastor I suppose?). Maybe they should have a prenup or something. Maybe he also isn't "all there" and in that case, there is a bigger problem in the future.

Anyway, I don't think being POA for a person with dementia entitles you to keep them from making a mistake. Legally is she well enough to make a legal decision to marry? Sounds like it. It doesn't sound like she's been declared incompetent or that you are her legal guardian.

I do think you should meet this guy and talk to whomever can give you a clue as to whether this is a delusion or not. If it is you are worrying about nothing. But be discreet if you can. Telling other people that your sister has dementia is something I don't think is something you should do until it is REALLY obvious to everyone.
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Caregiversister May 4, 2021
Yes, I need to be cautious in many things: who I speak to, what I say, if I intervene or not. I have not wanted to impinge on my sister’s independence or say anything about dementia to her. It is walking a fine line of discernment or judgment.

From last evening’s short visit with the pastor friend, it doesn’t seem so much like a delusion to my husband and I, but something real is going on there but still too early to say. It’s a wait and see situation.

Thank you!
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My mom is going for memory testing soon. I am going to make sure they understand that the issue is not necessarily her "memory", but she had issues. She can not do multi-step things without getting confused and lost in her thoughts. Can't make plans, except something familiar with my sister. She's done fine on the basic memory test but that does not look deeper into how the brain works or is failing to work. I find it a great disservice.

It's a little scary when older people of questionable mental capacity want to get married. Do they really know what they're doing? Is the intended spouse manipulating them? Is he a good person who will love and care for her, even as she is declining? Hard to know how much you can intervene and how much you just have to let go?
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Caregiversister May 3, 2021
my husband and I met this “boyfriend” tonight and he seems to be an upright and honorable person; however, I have the same reservations as you do regarding marriage at this age, no matter how honorable and upright. I have no thoughts about him, as it was a short visit, not an interrogation. I’m placing this whole situation at God’s feet and asking Him to light my path.

I agree about the neuro test (which she gets every time she sees the neurologist). It measures only one aspect of the mind. The rest of the symptoms count also, as does family input about behaviors.

I appreciate for your thoughts. It helps me have a more informed perspective on things.
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Caregiversister: I did see your update of the same day as your original post, April 28, 2021. I am very sorry to hear that she is so unwell that she used her retirement pension and family inheritance to pay off a fortune teller. Something seems VERY amiss there - the fortune teller could not have been that expensive.
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Caregiversister May 3, 2021
My sister told me that the fortune teller told her that the inheritance check was “dirty money”, so my sister relinquished it to her. I suppose the same thing could be true about the pension a few years earlier. I find this fact very disturbing. She also said that the fortune teller performed some kind of “exorcism” of some evil thing in my sister’s stomach. That is even more troubling, as I think there is great need for spiritual healing to happen, When my sister told me all of this, I then realized that she could not live on her own, and it explained the mystery of her financial problems for so many decades and now perhaps even her dementia illness. Maybe it isn’t dementia but the result of this fortune teller’s evil actions. I give it to God to handle this and to reveal what He wants us to know.

thank you for your comment. This whole caregiving experience has been a very difficult time. My son-in-Law suspects spiritual oppression going on. I believe it.
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Am I right in assuming that this retired pastor doesn't live with your sister? A similar thing happened with my aunt. She appeared fine to the boyfriend who ignored warnings from my cousin that her mom was dealing with dementia. Aunt sold her car, ended her apartment lease, and moved several states away to live with the boyfriend. It wasn't long before my cousin got the phone call explaining that things weren't working out (her dementia had become plain to him) and that her mother was moving back. He dropped her like a hot potato and her daughter had to pick up the pieces. If he is open to a trial period of living together, it might allow him to see the reality.
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Caregiversister May 3, 2021
my fears exactly, that if he doesn’t see problems now, he will after they are married. I am praying for wisdom to know how to think, act, and speak. Perhaps as they spend time together courting, it will become evident to him.
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Oh my, I am SO grateful to you all for your replies! I want to answer each of you, and it may take a while. So many good ideas to pursue.

I have been overwhelmed with being my sister’s “overseer”, and finally last weekend, I came up with a list of Agingcare.com advice that meets me right where I am. And I wrote another list of “what I cannot control” and “what I can control”. I’d love to share those with you all sometime.

One new idea to me is to not compare dementia behaviors with normal behaviors, to remember that her behaviors are part of the illness. Ive read and heard this so often but now it means something to me. So instead of thinking that a behavior is insane (even if it is), which causes me to go into sorrow, grief and angst, I need to label it as part of the illness, accept it as it is, pray for her, thank God for her and for the help He gives me. I have so much to learn, and I thank all of you for teaching me through this forum.

Until later,
Caregiversister
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SusanM56 May 5, 2021
Caregiversister, you need to report that fortuneteller to the police for elder financial abuse NOW. It is a criminal offense in California and most other states.
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It was good to read that you took her in - your profile mentions her living in CA, pretty far away from where you live, making it more difficult to watch out for her or observe what's going on!

Dementia is an umbrella term, that hovers over most cognitive issues. There are so many underlying causes and symptoms can vary widely. Even people DXed with the same condition can experience different symptoms and/or at different times. The "staging" used is to lump together observed behaviors by most. Some exhibit all, in the time frame indicated. Others may never experience them. Every person with dementia will have their own "journey", as it were, highly dependent on the type, what part of the brain is impacted, even their background and/or personality.

While she thinks she has a BF and that BF is going to marry her, is this just a delusion or is it real? Given all that you have observed about her, it sounds more like a delusion. I would, at the least, make a point to meet this "BF" and somehow ask about his "relationship" with your sister. No details, just asking how they met, what they plan, etc. I would NOT go revealing anything about her condition, esp since you don't know the whole picture yet! I also wouldn't even reveal her thoughts about impending marriage. It could impact their friendship, if there really is one. That would hurt her. If he indicates they are just bible study buds and nothing more, leave it at that. I wouldn't try to convince her otherwise. If, on the other hand, he indicates strong feelings and potential marriage, then you have to consider how to proceed. Despite how husband feels about that, it wouldn't benefit anyone to let that "plan" move forward. But, her medical condition is HERs and shouldn't be shared with others. IF this "BF" were considering marriage, you could dampen that by just saying that she has a medical condition.

As noted in another comment, her next appointment should include you presenting a list of observations you have made about her. Tests are tests and may reveal something, but these docs never see the test subject in their natural habitat and can dismiss a lot unless you can provide evidence otherwise! Also, if the test isn't targeted properly, they will miss the real DX.

Anyone relying on that test a PCP would administer in their office - this isn't extensive or conclusive. It is intended to get a baseline with the first iteration and then watch for changes in subsequent iterations. Too many people can pass that test easily.
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I wonder if this retired pastor knows anything about a wedding! This may be part of your sister's delusion/hope. My goodness, skip your service and visit your sister's church. Meet the guy. Even if you were to pass on the POA on to the new (fall)guy, you would still have obligations to your sister-- love, care, understanding.....
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For God's sake, do not let this woman marry. You don't know l00% of this man and for someone to take on this burden seems very odd to me. I wonder if he is with it. DO NOT ALLOW THIS. A friendship is fine but YOU should control what happens as she cannot. Do not let a stranger do this. As to the test, I think they have good moments but the fact is that they do have dementia which will get worse.
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I just read a scientific article yesterday that they’ve discovered four different types Alzheimer’s each one effecting a different part of the brain. This explains why a person might not have the memory issues but has the other difficulties described.
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CarolinaFran May 3, 2021
I would love to read this article as my Mom has selective memory loss. It might help to understand her situation.
Please give the source of the article and web address if you know it.
Thank you.
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My wildly bright and successful sister developed FTD in her late 50's, yet top medical experts in LA wouldn't make the diagnosis despite carefully documented observations from family and friends. She was confident, articulate, and blind to the notion that anything was wrong other than depression from losing her job. This inability to see that her behavior was off is typical of people suffering from FTD. It was only after I brought her to Vermont where she lived in an assisted living facility and could be observed in this "clinical" setting that she was finally diagnosed—and the neurologist was mystified why it took so long to come up with answers. The point of this highly abbreviated saga (that included, among other difficulties, an ultimately predatory boyfriend) is that people with FTD can "pass" for normal albeit a little eccentric or off, especially during doctor visits. I hope you can stay vigilant and follow your gut instincts in advocating for your sister. Good luck.
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Laurellel May 3, 2021
My Dad has FTD, behavioral variant. The interest in romance is high with this type of dementia, but memory not affected so much in the earlier stages. And it is so hard to get the correct diagnosis. My Dad was also incredibly bright, a true genius, an amazing career as a scientist, and it is so very sad. I am sorry your sister has this terrible disease and my heart goes out to you.
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My husband scored well on the tests the neurologist gave him for 2-3 years! I asked how this was possible given the behaviors I was seeing at home. One example was him claiming he needed a new PC because his wouldn’t turn on. He was pushing the button to the disc drive instead of the on/off button. He’d has this PC 2-3 years at that point and had been the first of our friends/neighbors to have a home computer. He had been quite adept at using it and was a go-to guy for computer advice. He also couldn’t put a bunch of empty hangers in a box without help. But he scored 28 out of 30 on that test. A year later he showed only mild cognitive impairment on a more comprehensive test. I was astounded. I was told he had been a really smart guy and really smart people can do well on the tests even when their decline is obvious to family. Even now he can do all the ADLs even as he has zero short term memory and daily delusions.
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Oskigirl May 3, 2021
That's what happened with my very-high-IQ mother. She could "turn it on" for the test and was so smart that she was snowing the doctors. We had to bring a list of documented issues to her doctor. When she finally "failed" a test it was in connection with a LTC insurance policy. She told us that she didn't get the questions right because it was "boring" and "didn't interest" her. She passed still in denial that there was anything wrong although she had agreed at that point to "temporarily" go to AL. It's really tough when someone is that smart.
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I think you should let your sister know your feelings but it is not up to you nor your business to interfere with your sister's romance.
Whatever needs to come out will during their dating.

Juse pray about it and let God handle it.
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The longer that I live and the older I get, the more real the idea that we only get to do this once. If it makes her happy and doesn’t hurt anyone, embrace it.
If you haven’t met him, do you even know if he intends to marry her? Contact him and have an honest conversation. Talk with him about her dementia and your concerns. You might keep the POA active though. Sometimes things don’t work out and you may be needed. You may have suspicions about him or his intentions, but do the work to meet and understand him. Also, if he doesn’t know that she has dementia, he may not know what he wants for his future with her.
Meet him. Have a discussion.
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Your sister may be misunderstanding her "boyfriend's" kindness for romantic love. I suggest meeting her friends in her Bible study group. Ask the "boyfriend" to share a meal with you and your sister. Get to asking about him, his life experiences, and his plans for the future. If he doesn't mention anything about a serious relationship with your sister, then he is just a kind friend and your sister has a crush on him. Then, there is no need to change anything legally. If he says he expects to share a long life with your sister, then you can make arrangements to have talks with him - without sis - about her cognitive issues. He probably already suspects she has them anyways.
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This may explain the disconnect with her doing well on memory but having deficits. The neurologist should be aware. May want to get a second opinion for an evaluation.

Scientists Have Identified Four Distinct Types of Alzheimer's And What They Do to Us (sciencealert.com).
The first variant, discovered in 33 percent of cases, sees tau spreading mainly within the temporal lobe and affecting patient memory. The second, found 18 percent of the time, spreads across the other parts of the cerebral cortex – memory problems are less common, but difficulties in planning and performing actions are more common.
The third variant, found in 30 percent of all cases, is where tau spreads in the visual cortex (used for processing sight) – patients have trouble orienting themselves, judging distance, and identifying shapes. The fourth and final variant, seen in 19 percent of cases, spreads asymmetrically in the brain's left hemisphere and affects language processing.
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CarolinaFran May 3, 2021
Thank you for sharing this information, and the source.
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Talk to the pastor and try to find out if he is aware of her condition (he may be). Can you let her stay in her pleasant "world"? Can they still be bible study friends? My mother, with advanced dementia, had a period where she and a man in her memory care facility became buddies. This relationship couldn't go anywhere, but they stood up for each other. He, also with dementia, once even set me straight by saying something to me that made me realize that I was micro-managing her care while I was with her and needed to step back. People with dementia often lose the ability to make good judgments. As POA you may have to take over her finances at some point. Be sure your name is on file with Medicare and Social Security to be able to speak on her behalf.
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disgustedtoo May 3, 2021
"Be sure your name is on file with Medicare and Social Security to be able to speak on her behalf."

Two notes on this:

1) POAs are no good for any federal agency
2) There's no file to be on with SS and Medicare.

Legally, the only way to take care of SS/Medicare, you have to apply to be Rep Payee.

This can be done via a local SS office (unless you enjoy being on hold for a long time when calling the main number.) It's free and not that hard. I did it through my own local office, not my mother's. I did not have to bring her with me. They didn't ask to look at anything I brought with me to show I'd been managing her finances, etc.

Even the yearly reporting isn't hard - it can be done with the form they send or can be done through your own SS account (they link you to it, you should NOT create an account in their name or use one they created.) The only bad part was trying to set up the special account at the CU. That was only because they weren't very good at how it is done, even with their own "cheat sheet"! Once it was finally done, a simple call to the local office set up electronic payments to that account (The first payment as Rep Payee comes as a check. Once set up, only the Rep has access and nothing else should be mingled into it.)
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With FTD sometimes current memory is good especially in the early stages, but function, decision making and long term memory are effected. My husband has FTD and he is good about current things but can not remember he was drafted during the Vietnam era, does not remember our pets we had when we were younger and can not make rational decisions. He also has delusions as part of the FTD. The idea that she is going to get married might be a delusion. A PET scan is the only test that shows function.
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People with vascular dementia usually do score well on ADL tests and neuropsych testing until they are deep into the condition. They have issues with higher cognitive function activities such as problem solving and judgment. They often seem fine, as my FIL did. They can be delusional as I think your sister is. Your caution is well founded as is your suspicion that something is really wrong. You might need to talk to this pastor to be sure he understands the situation and can distance himself.
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THANK YOU DEAR CAREGIVERS for your replies! ❤️ Hugs to you all. 🎶
My sister had a brain MRI which revealed mini-strokes in the lower brain. Neurologist has not come out definitively saying she has cerebral vascular dementia. He mentioned doing a spinal tap to determine if it was Alzheimer’s but he hasn’t mentioned it again.

I don’t discuss anything with my sister that is related to her dementia except yesterday to congratulate her on doing so well with the neuro test. (That test takes about 15 minutes with a neuro nurse at the office).

I have so many caution signs about her marrying:
I'm not at her Bible study group to see what actually goes on.
i don’t really know how much people in her group can detect dementia behaviors.
There are two people from her church I can talk to when I need to:
this “boyfriend” (about whom I have found life info online -how old, address, education, career, etc.). He himself told my sister that he had a stroke earlier in life from which he learned how to read, think, add, etc. with the help of his now deceased wife). Big red flags there!
a kind lady friend who drives her home from her weekday Bible study.
It IS difficult for me to think that no one has noticed her symptoms. I think someone should know. If my sister’s behaviors starts affecting people outside of my family, I think I have to say something.

in the past, my sister has confabulated stories from some event that happened. She recently handed me a dvd, asking me to give it to a family member, and a while later, with dvd in hand again, asked me if I had delivered it yet. And just yesterday continued to ask for whom is the neurology appointment (even when we talk about the appointment beforehand). We are currently applying for her third bankruptcy. She used her retirement pension and family inheritance to “pay off” a fortune teller. This last fact is what convinced me in 2019 that she should live with my husband and I. Husband has been so supportive and generous. ❤️🙏

I am stressed but am in process of seeking out therapy since our Alzheimer’s support group shut down at the hospital last year and hasn’t re-opened yet. I also have piano practice to offset the burnout. And quilting. And grandchildren. And exercise.

heartfelt thanks and warm regards to all of you wonderful caregivers!

caregiversister
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Laurellel May 3, 2021
Often, there is mixed dementia, or more than just one type involved, especially if there is a history of minor strokes.

I would suspect Frontotemporal Dementia (FTD). Memory is not so much affected in the earlier stages, but interest in romance can skyrocket, and they are easy prey for financial predators (as in gold digging "romantic partners" and various scam artists such as the fortune teller you mentioned). There is an excellent online support forum for FTD at ftdsupportforum dot com. You might want to join up and check it out to see if what you learn there matches up with your sister's symptoms. Most doctors, even neurologists, want to lump everyone under Alzheimer's and it can be frustrating trying to get the correct diagnosis.

My Dad has FTD, behavioral variant. He, too, has imagined he was going to marry women who were church or former work friends, and of course these women had no idea of such a thing. It is sweet but very sad. They can also become quite gullible and need protection from scammers. Another early sign is craving for sweets, bananas, sugary drinks. Loss of empathy can also begin fairly early, as well as lack of initiation (trouble getting started doing things). But, as they say, you've seen one case of FTD, you've seen one case. It can be a highly variable disease.

You sound like a wonderful sister and I am so sorry your sister is not well and wish you all the best!
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My Mom did well on her initial tests too. I was really surprised because there were some parts she did better than I may have. And she was in the early stage.

There was a post where the OP said the PCP said Mom was fine with his testing but the neurologist's test said Mom had Dementia. We told the OP the Neurologist's test was probably the correct one.

As you said Mom "thinks" she is getting married. Does Mom see or hear from this man outside of the Bible Study? My Mom thought the Daycare bus driver was her boyfriend and wanted me to call him. I told her I did not know his phone number.

I would find a way to talk to this man. Ask if there is something going on with him and Mom? It may all be Moms imagination. If not, then you need to make him aware of her diagnosis. I personally would not marry someone at my age, 71, going into it knowing I would be the caregiver eventually. And sooner more than later. And if she does marry, it will all come back on you eventually.
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Caregiversister Apr 28, 2021
Yes, at my sister’s age (77), I would think marriage is complicated and not a realistic possibility. I do know that whatever she thinks, that is her reality. It doesn’t matter if it is feasible or not. Her thinking seems juvenile to me, and maybe that is where she is at in terms of dementia age. No thought of consequences or planning ahead.
Thanks again for your input!
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I don't know of any articles citing a dementia patient who scored high on memory tests. Memory problems are typically the first symptoms that show themselves in dementia. But that's not always the case. Her neurologist must know that. Difficulty with speech, vision problems, or even not being as “sharp” as she once was, along with previously mentioned symptoms, could be the primary presentation. My wife situation was the opposite. In his final report, the neuropsychologist wrote she performed very poorly on memory measures but did very well on complex problem solving, verbal comprehension, reasoning, processing speed, etc., etc. So if those were her test results, the opposite can be true – good memory, poor results on other measures.
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Caregiversister Apr 28, 2021
That is definitely something to look into, the reversal of results in other tests. The neurologist hasn’t done any extensive testing to pinpoint the exact kind of dementia. I will ask him about more testing. Thank you for your input. I appreciate it very much.
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Do you honestly feel that the man she is going to marry is this "clueless" that he doesn't understand, after courting her and being with her, what her condition is? Anyone who married late in life takes the risk that BOTH of them take now. One of them will be caring for the other, and likely sooner than later. Let this happen. She passed her test. She wants to marry allow her to do so.
I don't recall the question, but if you can remember the title, if you google it you might be surprised to find it in the search engines. Many AgingCare questions are right there front and center. Also try variations of the title with the spy glass above on the title line and do the "search" for this site. I hope admins might know; I sure don't know more.
Again, your sister passed. You might consider talking with her and saying what you have seen that concerns you. Do know that often memory is GREATLY affected by anxiety, and your sister may be exhibiting some of that in her newfound love.
I sure wish you good luck. Not ALL dementia shows up in memory tests, though indicators usually do, and if the MD was concerned he should have advised on a more thorough testing. Some testing can run for hours as others here might tell you.
You really have no control over this. You surely can speak frankly with your sister and you SHOULD not only about where SHE is headed, but about where the new hubby is in health risks spectrum.
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Caregiversister Apr 28, 2021
Thank you for your input! I always get a lot out of your replies to others, and it is true in my case also. I will ponder what words and perspective I should use in talking with my sister. I try not to be her “mother” but sometimes it is necessary to overlook that fear and jump in because the stakes are high and the future possibilities are serious. I’ll keep you posted.
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My mom's memory was pretty much fine until about 6 months before her death in 2017. She was dxed with MCI in 2011 and Vascular Dementia in 2013 after a second stroke.

Memory is one part of the brain's functionality. Some others are executive functioning, ability to process complex information, attention, concentration. The list is pretty long.

Has your sister had comprehensive testing to stage her dementia?
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Caregiversister Apr 28, 2021
Thank you for your input! I just saw an article on instrumental ADL’s that made sense to me. My sister doesn’t seem to have problems with the 6 major ADL’s, but with the instrumental ADL’s of needing supervising with cooking, med management, finances (I do 95% of it), transportation (she doesn’t drive now), and household tasks (limited on her part), I do help her in those areas quite a lot. She is never alone. Either me, my husband or every once in a while, an extended family member are with her. Or she is at church.
I may request testing to determine what kind of dementia and what stage. Thank you for that idea!
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