My 74 year old mom got referred to a neurologist by her primary care. She thinks she is fine but when I called her doc they told me she has moderate memory loss and got aggressive during the cognitive test. Her whole family has noticed memory issues and I'm pretty sure she has dementia. I scheduled a neuro visit for when I visit her next but she already says she doesn't want to go. She has been a difficult person as far as I remember and is only getting worse. My dad accepts that she is declining and wants to take care of her, but he's old, too.

From what I've read, medications for dementia are kind of a crapshoot and require close tracking to see if they're helping or making things worse. I do not believe either of my parents are capable of doing this, even if my mom were willing to visit a neuro or take a prescription (no to both so far). Should I continue to push for her to see one? I'm also working on getting them to accept any kind of outside assistance and setting up their advance directives and only have so much energy to spend.

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IMO in order to get around her reluctance she doesn't need to hear about your suspicions or anything about your research into dementia, in fact pushing that agenda will only cause her to dig in her heels. How about something like this:
"Mom, you're way too young to have to give in to this, I want you to see someone to find out what is going on and who can help treat it so you can keep your independence".
Helpful Answer (12)
Reply to cwillie
dearstraits May 13, 2021
I agree with you and haven't mentioned anything about dementia. Getting her to primary care was difficult enough, she only went because the DMV requested medical evaluation.

It is difficult because she both asks me for help and then doesn't accept advice that contradicts her world view. Obviously she is scared and I feel bad for her.
Yes, she should see a neurologist if it is recommended. It’s true, meds are not always as helpful as we would like but a doctor visit is still in order to discuss further details and concerns.

Wishing you peace during this difficult challenge.
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Reply to NeedHelpWithMom

You are correct about medications. There is no known medication that for certain works for any dementia. However, there are huge differences in types of dementia and it is important to know. For instance Frontal lobe dementias are different than Lewy's and if you look up Dementias they will give you symptoms. Some involve hallucinations. Some are a result of multiple small strokes. The staging is very crucial. You are at some point going to need to get a POA that is DPOA activated, or may need to be representative payee. You are going to require proof of dementia from several MDs (or guardianship or conservatorship). Only you can decide what to do about this, but it is important. You can sit with your Mom and tell her that this needs to be done, and if it isn't done with cooperations, then it is only a matter of time before she is loaded into ambulance by EMT and taken to hospital where all of this will be done without her input, making it a good deal more difficult for her. Tell her of the changes you are seeing. The fact that she is reacting with such adamant outbursts is in itself diagnostic.
If you cannot get her cooperation then indeed you are up the creek until this comes to a head. And it will. You can do wellness checks. But soon enough it WILL come to EMS taking her in an ambulance for evaluation. It will be VERY difficult at this time to get anything but guardianship, certainly more difficult than getting POA. You may have a very small window of time in which to act now. That is the sad facts of the case. I sure wish you good luck. This is fairly early onset, and that's often one that progresses more quickly. OR it may be anxiety and depression. You can't know without a full evaluation.
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Reply to AlvaDeer
dearstraits May 13, 2021
Thank you, AlvaDeer. I did read about types of dementia. She seems to be fine physically (no tics or spasms, no signs of stroke, and nothing in bloodwork) and she doesn't have symptoms of Lewy Body. Plain old Alzheimers is my guess.

I was reading about anosognosia which seems to fit perfectly and also explains why she doesn't think she needs POA. My dad seems more willing to talk about end of life stuff. I am hopeful that if she seems him agreeing to POA for himself she will be more likely to follow suit.
You've made the appointment; hang on to it; when it approaches ask your mother if she will come with you to it; if she says no, call and cancel. Try again another time. Don't frighten or alienate her. The investigations and assessment are important, but getting them all done right now this minute? - not so much.

I'm narrowing my eyes at this "she got aggressive during the cognitive test" part. WHAT was said, or what attitude was demonstrated towards her, that so rubbed her up the wrong way and wasn't corrected promptly? Anyone carrying out the testing should be sensitive to a patient's signals, and if a patient is becoming stressed or upset you don't just plough ahead to the point where she is driven to aggression. Did anyone accompany her?

I should let the dust settle, then look for opportunities to discuss with your mother (both of your parents) how she would like to manage the aspects of life that she is, demonstrably, struggling with. Be specific: e.g. there are three complete daytime outfits laid out in the bed, but I can see that this morning you could only find your stained clothes from yesterday to put on. How would it be if we* put the next day's clothes ready at bedtime and stand the laundry basket in the corner for you to drop today's worn outfit in.

we* includes her but could be her + anyone - you, your Dad, a caregiver. It's important she stays in control of choosing what to wear.

What is your father's view of all this, by the way?

P.S. The example of the three outfits laid out and the dirty clothes being worn is from real life. The client thought she was fine. She could put her clothes ready. She DID put them ready. Time and again. It was just going all wrong at the point where she actually got dressed..!
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Reply to Countrymouse
dearstraits May 15, 2021
My dad's view of this is that she definitely has dementia. He and my brother drove her to her physical but she did not allow either of them to accompany her. She has gotten aggressive many times in the past so no one was surprised by this. According to the front desk, she kept asking the doctor when he moved back to town (he has always lived there) and got upset when he told her her has always lived there. She doesn't like to be contradicted and never has. Inventing stories out of whole cloth is new for her, though.

In any case, today the postcard reminder from the neuro came and she called me and told me to cancel it. When I refused she said she would call herself, so that's that. I have to fly in to see them so it's very unlikely I can convince her to change her mind, reschedule it, and accompany her during the week I am there.
My Mom, who was diagnosed with Alzheimer’s a few years ago, also did not want to go to the Dr, and thought she didn’t need it.
I told her “we” need to get a complete checkup regularly now that she’s reached a certain age, because it’s the right thing to do for her own health.
In order for me to be of help I needed a sort of baseline reading on her overall health.
I first took her to a regular neurologist, they did an MRI and diagnosed Alzheimer’s.
Then I found out there is such a thing as a geriatric neurologist, who was able to further help with diagnosis and treatment.
mom refused to take the Alzheimer’s meds, so I didn’t push with that. If it is Alzheimer’s, then it just delays the inevitable anyway, and made her have nightmares.
hopefully your parents will want to help you by cooperating and go to the Dr, as well as making their long term care plans.
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Reply to Loris15

I think a neurologist is huge for dementia quality of life. I brought my mother to the best one I could find. He put her on mementin which didn’t work but then aricept which did. Her speech got better as well as her confusion. Didn’t so much improve her memory but she was less confused which made her less upset and anxious. He is a great doctor takes her hand and calls her lovey. She likes him and that is rare.
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Reply to mdasse773

"You are at some point going to need to get a POA that is DPOA activated, or may need to be representative payee."

1) POA/DPOA for both would be a good idea ingeneral, if it can be accomplished before she progresses too far down the road. The need can be explained as necessary in case of emergency, and if you have one yourself, even better! Show it to her.

2) NO POA is needed to be SS Rep Payee. Federal entities don't even honor them. I was able to sign up via my local SS office easily - called, made appt, answered the Qs and waited for approval. Didn't need anything I brought along OR my mother.

The only time I needed something from a doc was for her pension, which was my dad's and it too was federal. Without ANY testing, I was able to get the doc we had at the time (fairly recent addition, due to the impending move to MC) to write what little was required, although it took 2 attempts to get just the right words! Were it not for the pension, I could say I needed advanced testing and medical/doctor documentation for NOTHING.

"You are going to require proof of dementia from several MDs (or guardianship or conservatorship)."

While there are situations where this might be true, it isn't always. IF the POA document specifies this is needed, then yes. IF one has to go the route of guardianship, that will be part of the process anyway. Otherwise, there's no need to rush out and upset her to get this done. Make sure you really NEED the verification first.

My mother never saw anyone other than a PCP (and the only test I am aware of was attempted by the latest doc office about 2+ years into already living in MC!!) I never had to show proof of dementia to anyone, not the banks/CUs, not the CC company, nor even the MC facility. In her case, it was most likely vascular dementia. I base this on her weight and being on BP meds for a long long time, as well as the progression.

There are cases where the "type" would be important, as there might be medications to alleviate some symptoms (or some to be avoided as well.) But there are ways to rule out other forms of dementia, often by symptoms observed and progression. For the most part, there are no medications that really are going to help. As noted above, there are some medications that should be avoided for certain types of dementia and some medications that can alleviate symptoms, if all other methods aren't working.

Unless you really really need specific documentation for something, why put herself and yourselves through this? The doctor has identified her as having moderate memory loss AND she became aggressive during the testing. A neurologist test is going to be more intensive and last longer. Given her reaction/behavior for this initial testing, I wouldn't want to be there!

As for discussing it with her, I NEVER used the "D" word around my mother. First of all, she mistakenly thought it meant you were "off your rocker", aka crazy. It doesn't mean that of course, but there was no changing her mind, even before dementia kicked in! Each person has a different experience, but often there are comparisons in symptoms and behaviors. In my mother's case, her world view was regressing in time. There was clearly short term memory loss (forgetting she said/did something, repeating statements and questions multiple times in short order AND denying there was anything wrong with her.) She was beginning to forget more recent activities or people (she was confusing my daughter with one of her cousins, someone I'd heard about a lot but never met!) She would insist that she was find, independent and could cook (nope X 3.) She would also state that yes, she might forget things, but she was old and entitled to forget things once in a while - problem is it wasn't once in a while, but there was no point trying to convince her otherwise! It's easier to go with the flow and work around whatever they believe.
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Reply to disgustedtoo

Nothing may have been mishandled during the cognitive testing to have the patient become aggressive. I recently underwent extensive testing as part of being in a clinical drug trial. The cognitive part of the tests had about 10 or 12 different parts. Some I sailed through and some made me a bit sad and frustrated because I knew I wasn't as sharp in those areas as I wanted to be. That could easily make someone mad and angry, and not handle their own response appropriately.
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Reply to vegaslady

I had a very challenging time with my dad, he felt he was fine, however, he was far from fine. I did everything in my power to address the issue. However, even with the POA in place, regrettably, depending on how this is written left me without the permissions to do anything. People have the impression the POA is able to do things but, until you get the incompetent medical decision, the person has every right to seek or refuse medical attention, live their life in the way they wish. My dad progressed to the point that his dementia was very bad, but he was in his stubbornness felt he was fine, and I was helpless. While I tried every angle I failed. I seeked legal council, but the fact was he was allowed to make his own decision as he was an adult. Continue to give it a go to see if mom will go to the neurologist, but don't push too hard, as think of it that she may realize she has a problem, but feels that she is going to loose everything she has worked hard for during her lifetime. I was told many people know they have problems, but fear of loss of control by someone else making their decisions for them is equivalent to being in jail.
Best wishes and keep trying but, in baby steps.
Helpful Answer (5)
Reply to thingsarecrazy8
paintertr May 17, 2021
A POA is usually a financial document. Try to get a health care directive.
"This routine continues until they turn about 75 years of age or if, for whatever reason, they have limited life expectancy."

Several online sites suggest mammograms after age 75 offer little, if any, benefit. In addition, if she has "moderate dementia" it may not make sense to continue these screenings. Given your description of attempting the cognitive screening test, which is usually just questions, not a sometimes painful, awkward and personally invasive "test", I should think she will balk at the mammogram. Personally I hate them. With maybe ONE exception, they always make me come back for a second round. To date, nothing. The last recall was a diagnostic, so it cost me about $150, surprise surprise! That won't happen again! The bone scan isn't nearly as bad, but again, to what purpose?

With dementia, depending on the type, her life expectancy could be as low as 5-8 years, but some live longer. A lot depends on the type and when it is Dxed. If she's already in the moderate stage, that could reduce the number of years remaining. It's really hard to guess how many years one has left, as the posted numbers are estimates based on averages.

Also according to online sites, breast cancer, untreated, could take about 8 years to cause death, if untreated. The bone scan will only show if she has osteoporosis, which can lead to broken bones, but with dementia, falls are common and breaks will happen with or without osteoporosis. NOTE: my mother clearly had osteoporosis (had the classic Dowager's Hump) yet despite age (97) and several falls (more like tumbles), she never broke anything.

Basically her life *could* be in a race as to what might take her from you, dementia, BC or something else. Even if the mammo showed BC, could she tolerate surgery and radiation and chemo? Anesthesia alone can accelerate the memory decline. That along with the radiation and chemo could leave her miserable and unable to cope with the treatments. She most likely would refuse any of the treatments, based on how she's been already!

Rather than fighting her to get all these "exams" done, spend the time learning more about dementia, what to expect and how to cope with all that comes with dementia. That's what worked best for me (I knew nothing about it before her symptoms raised flags.) There's a lot of information out there, just be sure to stick with trusted sites. They all present similar information, including attempts at "staging", which is based on averages, but there's always a chance one site or another may provide more information or a different take on symptoms.

My mother was quite a bit older, but other than conditions that might leave her in discomfort or pain, such as a UTI or broken bone, I had already decided not to pursue any serious medical intervention (as was in her plans before D), with one exception: I did continue the Mac Deg treatments, 4x a year. She had limited hearing so it was important to try to preserve what eyesight she still had. I only cancelled the Oct 2020 one and all going forward because she was already in a wheelchair, difficult to take places AND had a stroke about a month before that appt, which further affected her ability to help with moving her. She would not have done well with the trip and the extensive testing required before treatment.
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Reply to disgustedtoo

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