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. 💕🙏�