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. 💕🙏�
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.
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.
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
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. ❤️
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 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.