I'm looking for advice about a dementia patient who scored high on a memory test yet continued to show symptoms of dementia. Thoughts?

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.

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.

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.....

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.

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?

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.

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.

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.

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.

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