Early Onset(2)

JoseyWales

Can I just say I'm sick of everyone deciding that DH can't have dementia because he's too young? It even goes as far as a new psychiatrist who said maybe it is pseudodementia, due to depression. Seriously, pseudodementia doesn't get to stage 6 with atrophy in the brain. Pseudodementia doesn't get to the point where you forget what your own name is. I'm sorry that no one wants to say it's actually dementia, but I need HELP, not someone telling me it might still be depression after 10 years.

And to everyone else who says it could be Lyme disease, MS, depression, etc., can't you wrap your head around the fact that sometimes this hits younger people and stop telling me I haven't done everything I can to fix something that can't be fixed? 

And to all of you who say it might be those things to yourself right now, they've been ruled out by lumbar puncture testing. Of course the neurologist at that time didn't test for the Alzheimer's proteins because DH was "TOO YOUNG".

Anyone else run into these issues with their LO who is just too young to have dementia?

sandwichone123

Josey,

We're somewhat older than your dh and haven't had this issue, but I wanted to make sure you had a response. It is always so painful when professionals put their personal biases before the evidence of the case. I am also working full time and teach as well. My dh was approved (muted cheer) for disability this month, which is a load off for me, since it will pay off his student loans.

French

Hi josey, after 9 month thinking it was a  burn-out and depression, our family doctor sent us to the hospital memory center.  Alzheimer was diagnosed when my partner was 49 years old and no professional tried to discuss it after that. The psychiatrist even declare that he was now of no help. 

People are quite surprised when we tell them my partner has Alzheimer but never contested.

LadyTexan

I am so sorry that this happened to you. I hear your frustration and I feel it too.

I can only imagine my reaction, to the new psychiatrist, if I heard pseudodementia. I am sure I would have come unglued. 

To me, it would feel like a slap in the face followed by a gut punch. I might scream HEAR ME, LISTEN TO ME.

What a frustration and disappointment. It would shake my confidence in the provider and the healthcare system.

When I reflect on our journey, the road to diagnosis was so long and difficult. DH was 53 when symptoms became remarkable. The interviews, lab tests, neuropsych tests, failed lumbar puncture, MRIs, etc to "rule out everything else" were exhausting and we almost gave up. The diagnosis of EOAD was devastating but also explained so much. At this point in the journey, there is no pseudo about it. My DH does get depressed. That's understandable because DH has a terminal disease and is losing his abilities. DH's depression is not causing the dementia, in my opinion. DH's depression may make my DH's dementia symptoms more pronounced.

Many on this forum, who are also living this nightmare, understand your DH is not TOO YOUNG. Shame on the new psychiatrist.

60 falcon

I can relate.  Though my wife was 58 when she was finally diagnosed, I believe she should have been diagnosed a year or two sooner.  The docs never point-blank said she's too young to have it, but that's the implication I got all along.  It was so frustrating.  It was clear that the doctors, neurologists, and neuropsychologists weren't listening to me and were ignoring what they were seeing in my wife.  They blamed depression and PTSD.  It wasn't until DW's Physicians Assistant referred her to the Mayo Clinic in the neighboring state that we got a diagnosis.  That neurologist told me that the docs back home probably didn't diagnose her with Alz because of her age.

An earlier diagnosis wouldn't have made a difference, but it would have avoided much of the frustrations leading up to it.  I felt totally let down by the "medical professionals" where we live, except for my wife's PA who was great and who finally made the referral to Mayo.

I can't imagine how I'd react if a doctor told me now that it might be pseudo dementia.

Crushed

DW was 58 when she failed the clock drawing test in 2010.  The neurologist (Chief of Dementia at Johns Hopkins) wrote it down as MCI of the Amnesiac Type,  But the look she gave me was of intolerable sadness.  DW was a physician and had been on staff at Hopkins and they were about the same age.  I read her look as "if it's not Alzheimer's it's something much worse" The MRI ruled out a brain tumor and no one thought she was depressed or anything psychiatric.   She liked travel, family, sex, diving and work. But one after another her cognitive abilities declined . By early 2012 the new kaiser neurologist was irritated when he saw MCI and replaced it with Alzheimer's   She was 59
 

Jo C.

From you Profile I see that your husband was diagnosed with MCI in 2013, and then diagnosed with AD in 2016.

Is it possible to get your husband back to the provider that made the AD diagnosis and then get a letter or some sort of written documentation that there IS actually AD? Being that your husband qualfied for SSI, I am wondering if the qualifying diagnosis was for AD?  And if so, that too would give some impetus to the other non-believing physicians finally seeing the light so to speak.  Unless perhaps they disagree with that diagnosis but that leaves more unturned stones and a lot of frustration.

Too bad that insurances do not often cover the cost of  a PET Scan which can objectively tell so much; it should be part of the covered diagnostics when the diagnosis is being bandied about.  Wonder if a PET would be covered in his case IF you felt it worthwhile to get that once and for all diagnosis.

Very frustrating, but sometimes our care providers have biases or have never seen such a situation before, so there is disbelief UNTIL they finally see it in writing from another professional or diagnositics.   Sorry you must jump through all those hoops, it is really awful and should not be necessary.

Still . . . . I suppose that if one did not have dementia, your husband has certainly been worked up diagnostically for everything else and those findings have evidently been negative; that should tell those practitioners something, wouldn't one think?

J.

BlueMax

I truly feel your frustration.  My DW was showing memory and some speech signs and the doctors kept saying it was due to stress from a bad family business situation.  For two years I kept sending her back to the neurologist and her primary physician and they kept saying this despite her continued deterioration.  At one point they said it was a bad thyroid and did surgery on her, but took something other than the thyroid out!!  

Finally I intervened and went to the appointments and got the doctors to wake up and, after the neurologist gave her a quick 3 question test that she failed, this past July she finally was given the full cognitive test, followed by Lumbar extraction, and diagnosed with early onset at 61.  We lost precious time that DW could have started Donepezil or other medication to potentially slow it down.  

Early Onset is so rare that I believe the "professionals" want to diagnose the obvious as something else, and puzzlingly don't order a cognitive test that could give the correct answer.  She is now part of the LEADS study trying to turn a negative into a positive by perhaps helping to find a preventative cure for future generations.  

Today's headline about Carol Jenkins Barnett passing 5 yeas after diagnosis of early onset was a punch in the gut about my DW and family's future.    

DrinaJGB

I hear and well know your frustration regarding diagnosis.

It feels as if I have been beating my head against a brick wall for over a decade. All I have to show for it is a sore head.I've pretty much thrown in the towel in search of real answers about this, and will merely settle for riding this wave for possibly another decade or so.

 After all, what else is my life for- seems to be the attitude among practitioners. It's all up to me. I am only here on Earth to take care of DH for how many more decades and forget I actually ever had a life, much less deserve one.

Good luck getting any answers.