I am hoping I can get some insight here. Please bear with me if this post is long and a little disjointed. My Mom, 73, was recently diagnosed with dementia (more specifically : Major Neurocognitive Disorder without Behavioral Disturbance). I’m trying to navigate this and I have so many questions.
Firstly, I'm willing to accept this outcome, however, I have reason to believe she’s been misdiagnosed, as there are parts of the neurosych report that I disagree with, and other factors at play, and I want to be sure we are not just passively accepting this diagnosis without further exploration.
Some background: While Mom has been exhibiting a worsening memory in the last few years, to me, it seems like nothing more than normal aging. For example: she will think she “lost” her keys when all along they’re in her bag (she has done this her whole life and so do I - it’s a running family joke) and while it’s getting more frequent, it didn’t seem concerning. She doesn’t do things like put the keys in the fridge, for example.
She only decided to go for an assessment because she was “fed up” of her husband telling her how “bad” her memory was … and therein lies one issue of concern: for years, her husband has been emotionally abusive: covertly controlling, silent treatment and gaslighting (etc) - more specifically, HE will actually misremember something and then twist it into telling her SHE remembered wrong and call her crazy”. I’ve witnessed him do this many times and I see how it affects her : she becomes confused and questions her sanity…
Mom also suffers from untreated PTSD, anxiety and depression due to a series of traumas in her life. But the anxiety and depression has gotten worse since being with her husband (last 20 years) and I’m convinced it could have contributed to worsening memory as well. It’s well documented how abuse can affect executive function and memory and I worry that all this combined could be presenting as dementia.
Her Dr/NP hasn’t been helpful - she just prescribed her Memantine and Zoloft and seemed bemused when I asked for a referral to an Nuerologist / MRI saying to me “what do you hope to achieve from an MRI”? The initial Neurosych report explicitly said “further medical evaluation should be carried out to determine if there is a reversible cause” but it seemed the NP’s first move was to prescribe meds, without any future plan. She hadn’t even discussed the diagnosis with my Mum.
With all this in mind, I am concerned with how it was handled and where we go from here, so here are my questions:
* What would be the normal protocol for determining a dementia diagnosis? Shouldn’t cognitive assessments be followed by brain scans and blood tests? (And shouldn’t the GP/NP have initiated this without my having to request it - instead of just prescribing meds first?)
* Who should be responsible for telling my Mum of the diagnosis? The Neurosych sent the results to the Dr / NP and her NP never told my Mum explicitly about the diagnosis in her clinic visit to follow (NP admitted this to me and also admitted she herself didn’t “didn’t read the report in full”, even though she is aware my Mom doesn’t understand clinical language).
* What would the process of getting a second opinion look like? Would this mean my Mom would have to go through these rigorous tests again?
* Does anyone here have experience with Memantine - does it work? Would there be any reasons for her NOT to take it?
* Has anyone found that Zoloft helps with memory - or the contrary? I have read reports that say it helps dementia, others that say it makes it worse.
* Are there any key questions I should be asking that maybe are not obvious? We have the neurologist consult next month and I am in the process of arranging proxy so that I can speak to the Nueropsych who carried out the assessment and diagnosed her.
So sorry for all the questions, I feel overwhelmed and alone in this. Any insight at all would be massively appreciated. 💕🙏�
I'm sure others have said that an MRI is next, but either way, the drugs aren't going to make a stitch of difference, they will in fact speed up any brain damage.
As soon as my mum's abusive husband died, her MS progression stopped in its track and hasn't progressed since. 7 years later.
The truth is there's not much medically that can be done to help your mum. I'd look into alternative therapies and improving her diet. Get her to drink more water and cut her fat/refined sugar intake, eat more organic fruit and vegetables and if possible, get away from the toxic health damaging abuser.
Furthermore, memory issues ARE a part of normal aging! I have yet to meet ONE elder who's memory is as good as it was when they were 30-40 or 50! Fact. From the Alzheimer's website directly:
"Almost 40% of us will experience some form of memory loss after we turn 65 years old. But even if we experience memory loss, chances are still unlikely that we have dementia. For the most part, our memory loss is mild enough that we can still live our day-to-day lives without interruption.
Signs of memory loss as a part of normal aging
You're unable to remember details of a conversation or event that took place a year ago.
You're unable to remember the name of an acquaintance.
You forget things and events occasionally.
You occasionally have difficulty finding words.
You are worried about your memory, but your friends and relatives are not."
There are plenty of medications that CAN and DO help elders with their medical issues & many times where anti anxiety meds and/or anti depressants help an elder with dementia A LOT. To suggest that improving her diet at THIS stage of the game is going to do more than medications is even sillier than anything! Medication is not evil or the 'devil' and everyone should rely on their DOCTOR'S advice with such matters.
You should gather some information on gaslighting for your mom.
It sounds like that is what her husband does to make her question her own sanity.
Good news that the brain scan was clear, praise The Lord!
I’m sorry for not posting an update sooner. After Mom’s appointment, all of the emotions from the past few weeks (actually, months) came to a head and I needed to time to decompress.
As I hoped, the scans came up all normal which was a huge relief. I KNOW that this does not rule out dementia, but at least I feel a bit better knowing that there is nothing more sinister at play (tumor, stroke etc) at this very moment. Also, it seems that the accompanying headaches are a pinched nerve so it’s a relief to have some clarity there, too.
In the end, the best result out of all of this is Mom feeling that there’s nothing “wrong” with her after all, along with a sense of vindication after being made to feel crazy by her DH.
Whether more progressive dementia symptoms rear their head over the passage of time is another conversation, but I’ve decided this is a conversation she does not need to be privy to until its no longer tenable. I want her to live her life as normal as possible - without any worry - for as long as possible.
In the meantime, we will continue with the anti-depressants and see if things improve. I’m also working on getting her to seek talk therapy, encouraging her to get involved in more mood lifting activities and trying to get her away from the DH as often as possible. And I’ll just continue to observe.
So, for now, I’ll close the Dementia chapter and I’ll bookmark the page in case I need to revisit. I won’t leave this site entirely as there are many other things that I’ll be needing advice on (legal, future care etc) …. plus I’m sure I’ll need to vent about the DH now and again. And I promise to report back to share any developments should I start to see changes in her condition - either for the worse or the better.
Once again, I cannot thank you all enough for your genuine concern and warm, helpful advice. I’ve learned (and am still learning) so much from this space. Had I not come here, I would not have known where to even start or what I will need to look out for as time goes on. I know that I can’t prevent dementia, but I can at least work on being better prepared for what may come.
There are still some comments I want to reply to individually and I’ll do that in the coming days.
Thank you all again and much love. ❤️
I think some type of specialty Memory or cognitive clinic will give you the best comprehensive assessment. These are usually found connected to a Geriatric or Neurology practice for a major University center. I wish I could say that your diagnostic experience was rare but it is not. If you are not seeing a cognitive specialist many general PCPs do the minimum and then just start giving medications. The fact you were given the diagnosis of Major Neurocognitive disorder or "Dementia" states that a specific diagnosis has not been determined. These are catchall terms and do not denote a specific disease. Memantine is a medication that has been approved for Alzheimer's disease and has some benefit with Lewy Body Dementia but is generally used for someone in a Moderate stage of Dementia. Your mom sounds like she is only having mild symptoms based on your description. It is generally a very safe drug, with not a lot of side effects but it has also shown limited efficacy in earlier stages of dementia.
A "standard" cognitive workup usually entails an initial visit assessment (usually an hour to 1.5 hour appointment) where the provider looks at your overall medical picture, does a neurological exam and reviews your medications. They will then often order some basic labs, Neuropsych testing and an MRI. Medicare will generally cover Neuropsych testing only once a year so instead of getting a second Neuropsych opinion, I would take the testing reports you have to a specialist physician and let them interpret what they can from what was done. Our providers like to get a specialized MRI with Neuroquantative assessment that takes measurements of different parts of the brain that have to do with memory. With advancements in imaging, there are now "biomarkers" that can help distinguish different types of dementias, and depending on the findings of the MRI a specialist can decide if advanced imaging such as PET scans or a DAT scan are recommended. They can also help interpret the Neuropsych testing for you and put it in context with the other pieces of information.
A good diagnosis is made up of lots of pieces like a puzzle and it takes an engaged and specialized practitioner to take these tests, the family reports, the psych history, and their own assessments to come up with a good diagnosis.
Good luck
If you feel a physician/specialist was ineffective, it's generally a good idea to seek a second opinion. True story = Last March, my former (and poor) urologist rx'd a medicine that had a rare side effect, pneumonia. It hospitalized me for four days. I sought a new urologist after I was discharged, of course.
She has a great internist who is very familiar with dementia/Alz, and to this day, I have not subjected her to neuropsych testing or evaluation. But, due to clear family history, we did not have the doubts about her diagnosis like you do. I think more opinion(s) are appropriate in your case.
One more mention, in the early years, people with dementia will make valiant efforts to cover up their memory loss. Spend time with her and take notice of such tactics.
I'm not that well versed in all the possible causes of memory loss which as I understand can include hopefully for your Mom a simple medical fix, or maybe more peace in her life.
My husband's journey started 14 years ago with a neuropsychologist. After several non-physical tests such as filling out a questionnaire, drawing a clock, and a verbal memory test, that doctor suggested that my husband had Alzheimer's disease.
We then went to a couple of neurologists. One drew fluid from his spinal. My husband started taking donepezil and memantine. Two years later he participated in a clinical trial with Georgetown University Medical Center.
The trial lasted about 4 years and turned out to be a failed monthly infusion of a study drug. During that time, my husband received periodic interviews (so did I), he also had cognitive tests, and yearly MRI's. I was told that over 4 years the MRI's showed stages of his brain shrinking.
About 4 years later he started to sleep a lot. He'd take a nap after having had a nap. And he was prescribed sertraline (Zoloft). As an aside, he has no side effects. It helped him be more alert and he sleeps at the proper time and well.
I am 70. The wear and tear has me forgetting and loosing things, I believe, more than I would've if I hadn't been a sole caregiver.
May I suggest some tricks [I think what younger people call (Lifestyle) Hacks], that have made daily living more calm and may help your Mom.
- I now tether my keys to my crossbody bag. My red tether is long enough so I don't have to detach it to reach the door lock or our mailbox, and best of all the keys can slide to the very bottom of my purse and can still be easily fished out by pulling on the tether that's attached to the ring between the strap and the purse itself.
- Paperwork is kept in the order of importance or time sensitivity in a little (6 slotted) tiered desktop file sorter with post-its reminding me of the next step if, for example, I need to wait for a reply or have to make copies. Standing up on the desk is a great reminder. At bedtime my brain isn't rehashing what I have to remember.
- My checkbook has duplicate pages.
- I still like to use the mail, bills are paid immediately. Of course autopay may be better.
- The interior of my metal front door has a powerful clip/magnet for outgoing mail.
- Also, I've posted a little stickynote on the interior of my front door that has a check list that reads: Cell phone, Credit Cards, Wallet, and Keys (although everytime I hangup my purse for the day I check that I've got everything).
- Sometimes when I'm extra worn out I jot very brief notes during phone calls, even with friends, to remember the next time we speak to ask about a complaint (like an aching knee) that they may have reported to me on a prior call.
I can just about do w/o these hacks but with everything else, why should I? Anyway, I realized we all use one thing or another at every stage of our lives to make life easier so what the heck.
I realize your Mom's situation is more serious, but I hope that something here was helpful.
Btw, I joined one of the several caregiver support groups at IMCC Insight Memory Care Ctr. Conversely, I've told those caregivers about this very helpful "Aging Care forum" as well.
From time to time IMCC offers virtual presentions on different dementia related subjects. In two days the discussion is entitle "Normal Aging v. Dementia". It's free. I hope it's okay that I mentioned this.
Best of luck to you.
Re: NP - the neuropsych report recommended “further medical evaluation” to be carried out - does this mean only medication and nothing else? The neurologist was something I pushed for b/c there was no other care plan put in place by the NP (besides the meds) and nothing more was said to my Mom (not even a discussion of the diagnosis) by the NP so I felt it was sort of left dead in the water.
Thanks for the suggestion of therapy - I’m already arranging this as I have always felt this would be of huge benefit to her since she already does not feel very heard or seen in her home.
I know what stress can do to a persons memory and I know what an abusive relationship can do too and this is a great way for separation without it being anyones fault.
My mom had cognitive problems caused by overmedication and high blood pressure. This was misdiagnosed as “nothing we can do dementia” by more than one doctor. (When I later picked up her medical records, one doctor even added to the physician’s notes, “daughter is in denial.”
I found better doctors and personally did research so when I went in, I was as educated as possible regarding her medications. (specifically, purposes, warnings, negative side effects and interactions) and her medical conditions.
Mu mom’s memory and body functions improved miraculously when she got better doctors (willing to reduce some of the medications). She had memory losses associated with typical aging, but nothing more.
Some people also have “white coat syndrome” where they are so scared and intimidated by doctors that they don’t “test” well. My mom would get nervous when talking to doctors and not present as she did normally.
Follow your gut feelings! She is so lucky to have you as her advocate!
[What, may I ask, is so wrong with putting your car keys in the fridge? - says the woman who found her cup of coffee in the laundry cupboard after a half hour search. The real distinction is: forgetting where you put your car keys (even if it's the fridge) - normal. Forgetting what your car keys are for - dementia.]
With all of those medications and the stressful long-term emotional situation and in the absence of imaging... aren't you tempted to take her back to the drawing board, stop everything, and start again? I understand that the thought of all those tests again might be off-putting, but on the bright side at least you could insist they're done conscientiously and in the right order.
Just for example: at memory clinics here, we do the MRI (or contrast CT if MRI isn't possible) first. That scan then goes with the subject to the clinic, for functional testing, interview, and finally consultation with an Older Age Psychiatrist. It makes for a long old morning! - but at least there's method in it.
The really important thing is to reassure your mother of your respect, love, and confidence in her. What medication? - less so, and generally speaking less is more.
The neuropsych didn't tell my DH anything at the end of the testing; I'm a retired School Psychologist; I never told parents anything at the end of testing (you need to score stuff) so that's not unusual.
There should be a follow up meeting with the psychologist to explain the results to you and mom (if she agrees to you being there) to ask questions and query the validity of the results.
Questions to ask:
can my mom still drive?
Can she handle money?
Is she able to live alone without support?
What level of support does she need?
Is there further investigation that you would recommend, like imaging, testing, blood tests, etc.?
If this was YOUR parent, what level of care/intervention would you recommend?
Does it appear to you that there are any other mental health issues at play, like dementia, ADD, PTSD or other stuff that we haven't considered?
What are our next steps?
For what it's worth, your mom needs a team.
She needs an eldercare attorney to protect her financials.
She needs her neuropsych testing to be explained to her AND to you, preferably by the neuropsych him/herself. My husband had a neuropsych recently at the behest of his neurologist and the neurospsych spent an hour with us explaining the results. We have a follow up with the neurologist next month to go over next steps.
Have you contacted the neuropsych to say "we don't really understand what this report tells us; can we have a meeting with you to go over the results?".
If you want a second opinion on what the test results show, you need to have another neuropsychologist, not someone from a different discipline, interpret the results.
Is there a teaching hospital near mom that has a geriatrics department? Or a big rehab hospital like Rusk or Burke (those are the two I am familiar with) that have a dedicated Memory Clinic or the like? Getting this stuff done piecemeal by clinicians who are unfamiliar with each other is not as good a path as having a team that works together frequently and knows and trusts the other's work.
I see no reason that Medicare would have a problem with a neurologist, a psychiatrist and a neuropsych all working with mom. that's the team that my husband has, and that my mom had in the past.
Does mom have assets and income in her own name? Are all the accounts joint? I would consult a lawyer soon about getting those protected.
Re: speaking to the neurosych the report. I tried, but was told I needed proxy docs signed first (I’m only proxy with her Dr’s office), which I’m doing next week when I do the POA.
In your experience, did the neurosych talk to you and your husband at the *end* of the cognitive testing to give the results? My Mom said that he just said to her “okay you’re all set, you’ll have the results sent to you in 5 weeks and I’ll see you in two years” which does seem strange to me. She either didn’t understand what he told her about the diagnosis, he wasn’t clear enough about it, or he didn’t explain it to her at all. She did say he was quite dismissive and although I acknowledge there could be memory issues, my Mom still does have good judgement about what’s happening. Without anyone else there, though, I will never know what exactly happened.
YOu’re so right, doing this piecemeal will be a nightmare. I will do a search now for the local Alzheimer’s services in her area. Thanks for the suggestion, I’m not sure why these things are not occurring to me naturally I’m just so overwhelmed at all there is to do.
I would also encourage the same thing on the PoAs.
An often overlooked POA is for Mental Health and once signed can not be rescinded. Because of the abusive husband, I highly recommend getting one of these done. It will help you help your mom if she is ever threatened with institutionalization by this yahoo she married. It gives you all the authority to place her and nobody else has any say.
You are right to question this. The constant belittling and gaslighting could very well have her stressed to a point of not being able to function cognitively. Is it his intent to drive her mad or is he just a sick sob?
If you want some games to do check out some of the things they do in the neuro tests such as draw a clock set at 2:15.
Balance can be due to so many many things. There are fun balance exercises for you to do with Mom if you see one another with any frequency. You could ask MD for a PT assessment when you have POA, and attend with Mom. They will teach you balance and strengthening exercises. I cannot tell you how much they can help. They would be good for ALL of us to do. At 80, unfortunately, I sometimes only remember to do mine while waiting for a bus!
Thank you for all your responses. If anyone can help your Mom, it's you.
It sounds like there is an awful lot going on in your mom's life vis a vis her husband.
Does she want to stay with him, is question #1?
I do have one question that is at the back of my mind that I can not get rid of.
Would your mom consider a divorce at this time?
I realize that at 73 it is not something that many contemplate but with the emotional abuse that is going on I can not imagine she would want to remain in the situation. (Not even going to address the previous 20 years. )
I would also seek the advice of an Elder Care attorney and try to set up whatever safeguards that can be set up for her. If her husband is that controlling this could be a nightmare for her in the very near future. And I would hold off any discussion with him about diagnosis until she is protected financially.