Diagnosis Back to Square One
Just feeling a bit sad and depressed reading the passing of LOs. On the other hand, I can't help but rejoice that both PWD and caregiver are now at the "free from suffering" stage and wonder when it'll be my turn. Truly, hats off to the caregiver warriors who have bravely traversed this wretched journey. I am not as brave or resilient. I've only just begun, and already I'm exhausted and even more petrified. We still don't have a diagnosis.
It started with a visit to the ER and admission to the hospital for 2 weeks. At discharge, DH was referred to the Neurology dementia clinic for followup but the referral was rejected--reason unknown to this day! Nearly a year later, after being examined by a parade of doctors (his PCP, 4 neurologist, 5 psychiatrists, 2 epilepsy specialists), a neuropsych eval and 2 MRIs, a diagnosis is still undetermined although the lean is toward LBD while at discharge it was FTD.
DH finally had an appointment with a memory disorder specialist the other day and all went smoothly, perhaps too smoothly. DH was showtiming, big time, in front of the doctor! He passed all the tests and answered all the questions, albeit with a prompt here and there, and received a "mild memory problem" assessment. I nearly choked when I saw that on the after visit report. The doctor was reluctant to make a diagnosis in spite of the plethora of tests done during DH's hospital stay. He ordered another MRI and added "Atypical Alzheimer's" to the probable cause, including LBD and FTD. I suppose he's doing due diligence and not wanting to jump to conclusions. I must remember to ask whether taking rivastigmine attributed to DH's "exemplary performance." The positive is that DH may be accepted into some sort of clinical trial or research spearheaded by this doctor such that costs for certain tests will be covered which insurance otherwise would not. Anyhow, all will be discussed post MRI result, with first available appointment being a month out.
So here we are, almost a year later, and we are no closer to having a diagnosis. Instead, more probable causes are added. It's rather discouraging that the doctor did not even care to ask about my perspective on DH as his 24/7 caregiver. It's just too hard to keep the faith at the moment.
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Dio, the sad truth is that having a diagnosis doesn't offer much practical help. I guess if there were a promising clinical trial and you have the energy to do that (it will almost certainly involve a lot of input from you), it might be worth it. And I'm a believer in research, for sure, for the future good. There are clearly certain meds to avoid with FTD, that may be the most practical thing to come of any of it.
Too bad being in a research trial doesn't cover home help along with the research tests.
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First, there is absolutely no way to definitely diagnose prior to death. After death, the only way to know exactly what was wrong is to arrange (prior to death) a brain autopsy, where the brain needs to be removed from the body in a particular way in a timely fashion (and is costly). Perhaps participating in a clinical trial may afford that autopsy to be done for free, but you would need to discuss that with someone affiliated with the trial or with the facility you're participating in the trial.
Anything prior to that process is an educated guess, so anyone who is claiming to have a diagnosis for their LO has been given that same educated guess.
Were you hoping for a particular treatment? Are you trying to get him on disability? In other words, what are you hoping the diagnosis will bring for him?0 -
Dio, I understand your frustration, because one only learns what is important after reading posts from the members. The purpose of all the testing is initially to search for treatable, potentially reversible, medical conditions that mimic dementia. After that, the purpose is to determine if certain medications might be contraindicated.
My suggestion is to learn the stages and make legal and financial preparations and do safety measures. Read threads and post when you have questions or concerns. The members are knowledgeable and will help you!
Iris
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M1, Day, and Iris--thanks for responding. If true diagnosis only occurs post mortem via brain biopsy, why do I see so many people citing which dementia their LOs has? I suppose I just need to know what to expect in days/years ahead and hope that we can have a good comprehensive medication care plan for DH going forward. Moreover, when I'm in discussion forums or support groups, everyone seems to be talking about one form of dementia or another while I can't identify one for DH, so I kind of feel like I don't belong...silly, I know.
As for applying for SSDI, since DH is under 65, we are required by his prior employer to do so or suffer penalty in his post sick leave forced retirement medical insurance coverage. But if true diagnosis is post mortem, how does SS determine eligibility at this juncture? I suppose it doesn't really matter which type of dementia if DH is suffering from early onset dementia? I don't know. I just don't know.
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Everyone's "diagnosis" is the physician's educated guess. Since you need some sort of diagnosis for disability reasons, I'm sure the code attached to your visit gives indication of some sort of dementia. That's all that's needed. The type is not really important.
Your best guide to know what to do for him is going to be a list of the stages and things that occur in each stage. You can read ahead and see what you may need to prepare for. Your LO may exhibit 3 different stages and different times of day. There used to be one I liked quite well that broke the stages down into substages a, b, c, d, etc., but I can't find it.
Here are a few different "stages" lists and the symptoms. https://www.dementiacarecentral.com/aboutdementia/facts/stages/
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Dio wrote:
As for applying for SSDI, since DH is under 65, we are required by his prior employer to do so or suffer penalty in his post sick leave forced retirement medical insurance coverage. But if true diagnosis is post mortem, how does SS determine eligibility at this juncture? I suppose it doesn't really matter which type of dementia if DH is suffering from early onset dementia? I don't know. I just don't know.
GET A GOOD SOCIAL SECURITY LAWYER YESTERDAY
THEY KNOW ALL ABOUT DEMENTIA AND SS RULES
Fees are fixed and reasonable and often they can backdate the day of disability
From social security
Diagnostic testing: There is no specific clinical or laboratory diagnostic test for AD.
Diagnosis can only be confirmed by brain biopsy or postmortem examination of the brain. The diagnosis of early-onset AD is based on the combination of clinical and family history; neurological, cognitive, or neuropsychological examination; and neuroimaging.Pertinent clinical information includes history of onset and description of cognitive and functional impairments at home and at work. A decline in Mini-Mental Status Examination (MMSE) scores over time is a likely indicator of possible dementia. Neuroimaging, such as computerized tomography (CT) or magnetic resonance imaging (MRI) is useful for observing changes in the brain and excluding other causes of dementia.
Clinical information documenting a progressive dementia is critical and required for disability evaluation of early-onset AD. The preferable source of this information is the clinical records from the claimant’s medical source(s).
Note As a practical matter SS knows that differential diagnosis is difficult if you have dementia of any or mixed kind you are covered
https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022385
cf Mixed Dementias are conditions with more than one etiology for the dementia. The combination of Vascular dementia and Alzheimer’s disease (VaD) is the most common form.0 -
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Here is a link to stages as defined by Tam Cummings. D2N2, I don’t think this is the one you were talking about but thought I’d post anyway.
Dio, keep in mind that you DH may have symptoms that are in different stages.
http://txccc.net/wp-content/uploads/2017/10/tam_cummings_llc_dbat_v4.pdf
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Thanks, again, everyone! Members here are simply the best.
DH is definitely somewhere in the middle, stage 4 moving toward 5, but various symptoms from other stages can appear and disappear, and bounce all over from one day/hour to the next. Every doctor who has examined him has said the same, "a challenging case ... a conundrum."
And I'm not as concerned about the SSDI application approval as long as we've actively applied (to satisfy DH's prior employer's requirement). It'll eventually get resolved even if not expedited via compassionate allowance; nonetheless the case will be supported by DH's clinical data and his team of doctors. Plus, we are working with a consulting group, Allsup Inc., to assist with the SSDI application. I just thought it rather peculiar that definitive diagnosis is postmortem. CRUSHED: thanks for the additional explanation on SSDI process!
Guess I just have to be patient and wait for the MRI next month.
Sorry, it's overwhelming trying to piece everything together. And as we approach the anniversary of DH commencing his short-term sick leave last October when we started down this rabbit hole, I'm awash with sadness and grief looking back at all that has transpired.
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Dio, I think you are exactly right that folks like to have a diagnosis or "name" of dementia to hang their hat on. but it is given way too much weight, really. I don't think the MRI will make that much difference--be prepared for that. If it helps you get paperwork etc. straightened out, then fine--but please go into it not expecting it to be definitive, it may well not be. It could be normal, for all you know. The main thing it will do is rule out other things: tumors, hydrocephalus, strokes. It may show atrophy, it may show small vessel vascular changes (they are common and no one knows what they mean), it might show Lewy bodies (that would be the most definitive).0
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Sorry, I’m ignorant Victoria2020. What is ERISA and hitting the marks? And the pipeline reference?0
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Victoria2020 wrote:
If you have employer ERISA LTD and don't hit your marks, it is a long expen$ive procedure to get it fixed and you'd be out legal fee$, get a tax bite if you recover most likely too.
I had to sue my employer in order to receive employer-provided LTD benefits and I had to pay my attorney $70,000 (not tax deductible) which was taken out of my total award going forward. My employer kept sending me form letters stating "need further medical records" until I got the lawyers involved. BTW, this was a big insurance claim law office. I believe I was taken advantage of, but I was in no condition to protest.
Iris
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https://tamcummings.com/download/239/
This list is specific to frontal-temporal dementia also know as FTD. My husband was diagnosed with atypical frontal lobe dementia prior to his death. He was part of a research program at Northwestern and did have a brain autopsy for free as a research participant. The report showed a mixed combination of things
Alzheimer’s pathology
TDP-43 pathology
CAA (cerebral amyloid angiopathy)
Hippocampal sclerosis
Vascular dementia
In other words, he was a very sick man. Died at the age of 72. Fast moving disease. From our 1st visit to the neurologist to his death was only 4 years. His course followed the above FTD link more so than Alzheimer’s. Frontal lobe behaviors were the biggest problem then he developed “belly seizures”. He actually died from a massive stroke due to the CAA. He’s been gone 5 years now. The whole experience is as clear in my mind as if it were yesterday.
The main use of a diagnosis is to qualify for services to help. On the other hand, the diagnosis gave me 4 years to mentally prepare for his death.
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Dio wrote:
. . . lean is toward LBD . . . He passed all the tests and answered all the questions.. . . So here we are, almost a year later, and we are no closer to having a diagnosis. Instead, more probable causes are added.
Dio,
All of this sounds normal if your husband has LBD. It's very common that LBD patients can still remember things (short and long term) until death. Instead, they have other types of congitive issues. Not having a firm diagnosis is also normal. The attached link shows the diagnosis guidelines that physicians use. As you can see, if the patient hasn't yet accumulated enough symptoms, they will be classified as "possible LBD" or "probable LBD." At some point, when more symptoms show up (as they invariably will), the diagnosis will be bumped up to LBD.
If you are interested, there is a support forum for LBD spouses. It is an active group and well organized, but does require members to apply and be accepted.
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Thanks again for your replies, Everyone! The doc did say that they have better CSF biomarkers and other forms of tests (not covered by insurance, unfortunately) that aid in diagnosis.0
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What is going to help whatever the diagnosis is caregiver education. Google all you can about non pharmacological management of dementia.
Read Naomi Feil, plug into Teepa Snow and stay connected here. We understand and care!
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Thank you for the clarification Victoria2020. I appreciate it!0
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Just to close out with update on DH's latest MRI...
Everyone here should get an honorary doctorate degree in Dementia! Thanks to all of your warnings I didn't hold out high hopes regarding a diagnosis based on the MRI. As you all predicted, there is no diagnosis. As it turned out, the MRI was done mainly to rule out possible rapid progressive dementia but there weren't signs of that. The doctor cannot determine whether it's atypical Alzheimer's or LBD. So either we participate in a research program to get more tests done and perhaps access to clinical trials, otherwise we're on our own. Of course, we can pay out of pocket for some of these tests which insurance won't cover, but then to what end will DH benefit from these costly tests?! I don't know. I can't seem to fit DH into any stage of progression either. I suppose it's just one day at a time until there's more physical presentation of decline to deal with.
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Thanks from me too, Victoria, for the clarification. We're like sitting ducks, because we don't know enough to protest effectively.
Iris
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Thats disappointing news Dio. We’re in the diagnostics phase now too, and I remembered a comment from this video that Medicare, and some insurance companies, will authorize PET scans under certain circumstances, for differentiating Alz from other dementias. This is the link, and the comment is at 36:55. Dr. Boeve says that the clinician’s order needs to state “differentiation of Alz and FTD” Note that the video is six years old though, and I’m sure things have changed. While having a diagnosis may not change anything, I think it will help me accept and move on.
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Hi Dio,
It sounds like we are on a parallel path. Sorry to hear you are having similar struggles with getting a definitive diagnosis. My DH is in his mid-60s and went to the ED in April. We have been trying to navigate through the healthcare system since then. His referral to a neurologist was initially denied and was only pushed through because his PCP advocated for him since he was declining so quickly. I still get asked, “how did he get into a neurologist?” reflecting that it’s often denied. The fact that he got in was helpful only to rule out other types of issues such as tumors, stroke, etc. The neurologist told me at the first visit that no matter what he ordered nor whom my DH saw, it most likely wouldn’t impact the path forward at all or the outcome. His words hit me like a brick wall, yet align with the comments to you from M1 that “the sad truth is that having a diagnosis doesn't offer much practical help”. That goes along with what we are finding.
For me, getting a diagnosis would help me feel as though I have done everything possible for him, enable me to field questions from his family/friends, and offer a hint of what the future may be like (even though I know it but don’t want to acknowledge it). Each provider has said that they are puzzled and all MRIs, Lumbar punctures, and blood work have been normal, supporting the idea that a diagnosis may not be able to be made until the end.
He’s going to be evaluated for a research study next month in an effort to offer “something”. This will get him a more detailed assessment with access to a memory care clinic to include a full neuropsychological evaluation. I’m hopeful that this will help with medication adjustments to help control different symptoms moving forward.
Everyone’s responses to your post have been very helpful and validating. Thanks for sharing.
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Northeaster wrote:
For me, getting a diagnosis would help me feel as though I have done everything possible for him, enable me to field questions from his family/friends, and offer a hint of what the future may be like (even though I know it but don’t want to acknowledge it). Each provider has said that they are puzzled and all MRIs, Lumbar punctures, and blood work have been normal, supporting the idea that a diagnosis may not be able to be made until the end.
He’s going to be evaluated for a research study next month in an effort to offer “something”. This will get him a more detailed assessment with access to a memory care clinic to include a full neuropsychological evaluation. I’m hopeful that this will help with medication adjustments to help control different symptoms moving forward.
Everyone’s responses to your post have been very helpful and validating. Thanks for sharing.
Sadly, so many of us have gone through this wretched path. What you described above is exactly what's happened to my husband. He's only 61. According to his current neurologist who ordered the MRI, he wants to know whether it's LBD or Alzheimer's. I'm ignorant but I suppose the treatment/medications are different. He wants to do another spinal tap (lumbar puncture) to look for specific biomarkers; the hospital didn't test for these last year. This can be accomplished through the research study. Patience is not my strength, so the wait to get into the research program and then get started is quite unbearable. The neurologist is also considering changing from rivastigmine to donepezil (Aricept). Anyhow, I need to count my blessings that DH is now under the care of the neuroscience department head (we had a lot of help to get here).
Good luck with you and yours, going forward!
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I agree that the wait is terrible and share your frustration. So glad that your husband is now getting the attention and guidance that's needed. My DH is on Memantine and will be exploring the VIVA-MIND study. It's a long study with a lot of testing. I'm unsure if he'll qualify since he's had such a rapid downward progression yet want to examine all options. If he is a candidate, participation requires frequent visits (monthly) and for a long period of time (20 months). I would never have believed that life would change so quickly. He just retired last fall so we could finally enjoy life since we both have put in full careers. (I still work part-time.) You just never know!
Good luck to you and yours as well. I'll be praying.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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