Mom diagnosed with dementia, but I’m not convinced and I have so many questions. Any insights?

here are my thoughts and your mom is lucky to have you looking out for her when her spouse is abusive.
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”? I’m glad you stood your ground and asked for referral. My husband is a specialist and I get the same horrible treatment from doctors but I just stand my ground. Always good to get second opinion and look for a doctor that you can work with. This can be a long journey/care, you need a team work with your doctors.
Memantine and Zoloft are not bad esp at low dose. Your mom might benefit. Start at low dose and look for side effects by asking your mom and by observing. Memantine is more beneficial to individuals when the disease is caught early. And zoloft at low dose took care of my moms anxiety. Widely used meds for anxiety.

* 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?). Zoloft can be given for anxiety and OCD (given to dementia patient for anxiety). With both my parents having been diagnosed… primary doctor, neurologist, neuropsych or gerontologist can give a short mini mental test (30questions no more than 5mins) and an MRI brain scan. Some doctors will do CT scan before MRI to make sure no dementia problems are in the brain like stroke. My parents had the minimental test and MRI. When MRI a result came back pointing towards dementia a CT scan was done and my mom was definitive for Alzheimer’s (caught early) and dad was disqualified for CT scan his brain was deteriorated on an MRI but no Alzheimer’s just general dementia. After this your mom can do a 2hour questionnaire test to see how bad their memory is and is given by a neuropsych.

* 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.
- it depends who you would like to be the bearer of bad news. My parents listen and love their doctor. Their doctor told them in simple terms about dementia but my parents were in full mode denial. We tried to explain it different to my parents and we were met with denial as well. That’s when we didn’t push and we just now address things early on as they happen.

* 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?
- you don’t have to do the tests unless you are convinced they are not done correctly. Some tests if done twice will be denied coverage by insurance unless it’s noted as second opinion and justified. Go for 2nd opinion and show results and hopefully you can get better explanation and might stick with 2nd doctor. My parents have a geriatrician, neurologist and GP and I weigh each of what they say.

* Does anyone here have experience with Memantine - does it work?
- not everyone is the same. At early stages is better outcome. Start at low dose if your mom or you see/feel something ugly stop gradually and talk to doctors. Headache was a primary complain for my parents. We had to stop it didn’t help.

* Has anyone found that Zoloft helps with memory - or the contrary?
- at low dose no. It helps with anxiety and ocd that can be debilitating to some.

* 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.
- yes definitely make your mom sign a medical POA and you as agent before her spouse steps in. Might be prudent to speak with an elderly law. 🙏

When my mother was exhibiting signs of dementia, she had an MRI that was normal. She was then given a MoCA cognizance test and scored an 18 out of 30 which gave her a dx of progressive dementia in 2016. She continued to go downhill with her memory problems, incontinence, balance problems, and need for help with ADLs. She didn't develop aphasia until recently with advanced dementia, never wandered, still feeds herself but is wheelchair bound and very riddled with delusions. Last time she was tested in 2019, she scored a 10 on the MoCA exam. It was a slow but steady decline for her over the past 5 years and yes, the diagnosis in her case was correct. She's taken no meds for dementia as none are known to do much, but she's taken Wellbutrin for depression since 2011 at the max dose. She'd be much worse without it.

She started introducing me as her mother in the earlier days of her dx. That's when I knew something was off.

I would be sure your mother is given a cognizance test, see what her score is, and if she passes the clock test which tests executive brain function. If she can draw the face of a clock showing 3 o'clock and it actually looks like the face of a clock, I wouldn't worry too much about dementia. If she draws a blob with no semblance to a clock, her executive brain function is compromised meaning the conductor of the orchestra is missing and the band hasn't a clue what to do, in layman's terms.

That is over simplified language, of course, but pretty much sums up what you're going to specialists to figure out.

Best of luck with all of this. It's a lot.

Thank you so much for all your helpful input! I’m so overwhelmed and grateful for the support you’ve all shown here and for the time you’ve taken to reply. I feel seen and more confident in next steps. I’ll respond to you all individually soon but just to touch on the most common things mentioned:

POA : I will be getting a POAs this week. Mom already expressed she me wanted as her agent. She doesn’t want her husband to know of her diagnosis now b/c she is so worried he will “make fun of her” b/c it will confirm she is “the crazy one” and there is a strained relationship w/his family because he only tells them how “she’s a nag”, but not what he does to her. I will tell him the results eventually, but considering that her mental health is so fragile atm, I want to respect her wish. If we tell him before we get a second opinion - and say the second opinion rules out dementia - she’ll feel forever judged by him/them. He has made her so paranoid that she does not want to be any more vulnerable around him than she already is. I’m also working on getting her weekly therapy b/c I know having someone to talk to will empower her and alleviate these feelings a bit. He is away for a week right now and she is visibly more relaxed and confident.

Memory: B/C of the character limit, I could only summarise with one example, but a couple more: she does repeat herself. But I notice its more around her husband. He ignores her most days and my Mother is a very chatty person, I feel its her trying to just have some interaction with him, seeking his approval. And when I look at the examples for what is considered normal aging vs dementia, she does not meet the criteria for dementia. She is aware of where she lives, knows how to get home, if she forgets recent events and I remind her, it will jog her memory and she can elaborate on details of what happened so I don’t think she is “pretending” to remember. I’ve also been testing her by pretending I’m forgetting things (e.g. “what did I have for dinner last night?” - or “what did we do Saturday”, “did you see my keys”) and she is often able to answer without much hesitation. She carries on with her daily activities - the thing in the report that I found v questionable was that she was “forgetting recipes that she’s done for years” but what I see is a woman who has had to wait on a man who has neglected her emotionally and finds cooking for him stressful b/c she thinks it won’t be good enough so she is constantly questioning if she’ll to “get it right” (my Mom also has a 9th grade education and has resigned herself to being “stupid”). When she cooks with or for me, she is less anxious. 

I realise that the cognitive assessments are thorough and take into account education level etc but I also know that my Mum is very nervous being “tested” and she feel has total mind blocks under pressure. She might also respond in ways she wouldn’t normally and or thinks she is “supposed” to. I also know how emotional neglect and depression can really wreak havoc on your daily functioning as well. It is also worth mentioning that the assessment was “broken up”, not taken successively as they were supposed to be b/c my Mum had to go to see her ailing brother in a different state. There is even a disclaimer on the report which says that this may have affected its accuracy. And my mother said she felt like the neurosych was being very dismissive after she came back from the short hiatus. Also when I checked the reviews for this clinic, someone said they had been misdiagnosed. Again I am not trying to clutch at straws here - I am fully willing to accept it could be dementia — but all these things raise red flags. Perhaps it is even early onset, but it certainly does not feel like “major” decline as the diagnosis suggests. I just want to be sure we are getting as “full” a picture as we can.

Once again thank you all from the bottom of my heart, this is a wonderful, supportive group and I’m so happy I am here. 🙏🏼❤️ 🙏🏼

Heidiann,

There are a few things to think about. Most important you mention getting a proxy so you can talk to the Neuropsychologist. Who has POA over finances and Healthcare Representative (Medical POA) over Mum? Please have these be your next steps. A person can still assign them when they have mild dementia or cognitive decline. This is especially important as you said her husband is abusive.

With the Healthcare Representative you can speak to her medical practitioners, but they depending on the country may also ask her to give permission for them to reply to you. When she is incapacitated, you would be responsible for making medical decisions on her behalf.

Denial is a common response for family members when a parent is diagnosed with dementia. My step sister still insists her Dad did not have dementia, he died in 2018. She lived away, where as we saw him weekly and he definitely was displaying signs of dementia and he had a medical diagnosis. But he could fake it on her short visits a couple times a year and she denied what she was seeing when he was tired and could not fake it any longer. Showtiming.

I understand your frustration with a listing of symptoms, but no definitive label. My son had a psychotic break last spring, after 3 weeks of trying we got him admitted to the hospital. He was released 3.5 weeks later, with medication to treat the psychosis, but we do not know if he is schizophrenic, Bipolar, or what? It is crazy making as a family.

The Zoloft may be an appropriate med, given that you say that your mom has been depressed for a long time. I see no downside to starting it (it takes a few weeks to kick in) and it may give her mood a boost.

I am curious what parts of the testing you disagree with. Something that occurs to me is that in a neuro-psych, the clinician may pose "what would you do if" scenarios; your mom may have a comfortable routine and be able to know "what to do if" is a situation that gets repeated often (run out of food, see someone she knows on the street), but might now be able to give a good answer to more unique or stressful events like "see a car accident" or "fall when no one is around".

Food for thought.

You can certainly get a second neuro-psychologist to take a look at the results and see if they come to the same conclusion.

You use the word "Mum". Are you in the US, UK or other Country.

I ask because on this forum members are mostly from the US. The US is not Socialized medicine. We have members from the UK and Canada too. Yes, we have Primary care physicians but we also have the ability to get second opinions. We don't need a PCP to sign off. Medicare makes this even easier. As long as a doctor takes Medicare we can go to any doctor we choose. I never asked for a referral for Mom for a Neurologist. I just made the appt.

If Mom is on Medicare in the US, then no need for a referral. You find a Neurologist that excepts Medicare and take her. Secondary insurance usually goes along with Medicare unless...a Medicare advantage. You may need to use a doctor in their network. Not so with straight Medicare and a secondary.

Wow, your writeup was wonderful. And so complete. In all honesty if anyone can figure out whether/how to get a second opinion, it's you. If anyone can look up the facts on the medications, it's you.
A question here: you tell us of the husband in this case. Is he also Mom's POA, and not you? Because if he is, then she has an abusive (taking your word for it) husband as her POA. The outcome of that won't be good.
So far MRIs cannot diagnose any age related dementia (and that's usually done on autopsy is anyone cares any longer, though there can be clues for some dementias such as vascular dementia, for losses of the matter in the brain, and etc. For my brothers dx of probable early Lewy's Dementia it came from his telling his docs his symptoms. However many of his symptoms could have come from other things (a decade of balance issues--Lewy's they said. Yet in the area of the brain directing balance they found and "old" "calcified" brain tumor that could ALSO have dictated this. He had evidence in his home of an instant and profound change in handwriting and of hearing changes on phone. And so on. I won't go into detail.
For all these reasons, MRIs are common and helpful so the answer to that Doc's question is "What I hope to find is any evidence of loss of matter, of signs of vascular changes, of small stroke evidence, of any tumor present, and of a way of as - you - say differentiating the dx."
Now on to meds. There are no medications known to change the outcome in dementia so far. Zoloft, however, may help with some things you mentioned that are causing chronic depression, like staying with "that man". And when there is relief of that, then there is often a lifting of symptoms. For instance, when I was made, by my bro, the Trustee and POA for him and took over ALL BILLS, and when he went into ALF, his anxiety level went down so far that he did nothing but IMPROVE in symtoms the two years before his death from another condition. The loss of short term memory, of loss of keys, etc is a known component in people with anxiety disorder.
As to the new meds approved by FDA, the FDA itself already has admitted there is zero evidence they work but they approved them because "the populace wants them". The newest and most expensive has been reported to cause brain bleeds. So much so that testing of them was stopped in some instances. So....just sayin. They are enormously expensive and apparent the only CLAIM they work by their own company is in early diagnosis.
If misplacing keys is the only symptom we have here, no wandering, no getting lost, no forgetting your address after 40 years living someplace, then I think you need to vigorously pursue another second opinion. The diagnosis Mom has in hand already calls for a differentiating of symptoms and diagnosis.
As far as the marriage, what is Mom's plan there? Is she "happy " and planning to stay and leaving her hubby in charge of her future. Because you and Mom may be in for a world of hurt until the end on that one.
As to who tells Mom? Her doctor. And her POA should be there at that time.
I sure do wish you luck. I am very concerned that you are the one so concerned for Mom but may not have any rights to direct anything in her protection. Best out to you. Your writeup was classic good, what a nurse would hope for in a patient's family providing history. YOU should be the POA. That you may not be worries me more than I can say.

Cwillie is exactly right. Without determining the cause of her symptoms, there is no diagnosis at all- just symptoms.

You have a right to be suspicious of the “diagnosis”. There is so much wrong with how the NP is handling this situation. You haven't mentioned any problems with your mom's ADLs. So besides having cognitive issues (which you're not even convinced of), dementia requires that a person has difficulty with day to day living, or exhibit one of the 3 As, aphasia, apraxia, and agnosia. Can she perform most ADLs? Does she have difficulty with her speech? Does her judgment and decision making seem normal? At worst she may be displaying MCI. At best her symptoms may be treatable. Her depression and PTSD can cause dementia like symptoms by themselves.

The neuropsych report states that further testing should be done to determine the cause of her symptoms. Yet NP's comment “what do you hope to achieve from an MRI?", shows his/her ignorance of dementia like symptoms and how to further evaluate them. Performing an MRI and blood tests can help to arrive at a diagnosis, and whether it is a treatable condition or not. I think prescribing meds is way too premature, and prescribing Zoloft without any behavioral issues seems pointless. Zoloft is not an approved drug for dementia symptoms. Memantine is a drug for moderately to severe symptoms once a diagnosis is determined, not for MCI, if indeed that is the cause. Memantine is usually prescribes with donepizil.

It seems to me that the NP is out of her league in recognizing and further evaluating dementia like symptoms. You might want to keep him/her for treating a bad cold, but I would look for a gerontologist for her cognitive issues.

In my mom's case, her "team" consisted of a neurologist, neuropsychologist and psychiatric nurse practitioner. We were required to bring her MRIs in before the first appoint (they showed an old stroke, likely responsible for her Mild Cognitive Impairment).

The neurologist gave the results to my mom.

I would find a geriatric psychiatrist to weigh in on medications. If your mom's GP is not a geriatrics specialist, now is the time to find one.

The rule outs are thyroid, normal pressure hydrocephalus, some vitamin deficiencies and a couple of others.

A neurocognitive battery is a pretty objective measure, not based on "opinion". A question is asked and answered, a task is given and completed and those produce scores which are measured against the norms for the same-aged population.

Follow up with the neuro and please let us know how you get on!!

From my reading she has been given a diagnosis that is no diagnosis at all because it doesn't do anything to explain the cause. Read read read whatever you can about Neurocognitive Disorders and dementias in general. If her doctor is dismissive then look for a new one, a gerontologist if at all possible. Make someone take the time to explain the report item by item. And I'd question the prescription for Zoloft, since her diagnosis excludes behavioural symptoms I'd want to know why an antidepressant was considered appropriate.

My main concern is whether you have any power to do anything, if you are not her POA and she is still with her dismissive spouse then your ability to act on her behalf is basically nonexistent (HIPAA is not enough).