FTD - NOTE: I wanted to post this under FTD but see no easy way to do that.
My LO has been sliding downward with mental issues 15 years. First 10, during which he ended his career as a top scientist early due to odd behavior issues, he was diagnosed as many on this dementia journey: typical depression, anger issues, suicidality. Then, finally, the team that had been caring for him all that time, prescribing meds... diagnosed 95% probable FTD.
Since then, for 5 years, various "top experts" in the nation say they cannot rule out FTD but cannot agree with 95% prob FTD, change his meds after he goes into extreme hostile outbreak meltdown every few months (always at my expense) and none - not one - has ever done a complete comprehensive evaluation -- the type that takes 2-3 days usually in-patient and that includes a second interview (that is, only with his significant other, me).
Experts have given short tests -two 2-hour tests only, mainly memory, that he passes without trouble - and so he gets no dx. He has extremely high IQ, taught medical students how to give those tests, and learned all the memory tricks long long ago so can count backwards by any digit and such with no problem - long term. Tests he's been given simply do not show he can't find ketchup bottle at front of refrigerator, or his keys under a paper of his, or his credit card he left at the store, or my birthday, or sometimes, even how to put two batteries into a flashlight...
Experts say it could be an array of diseases resulting in similar FTD behaviors, but medical searches show me none have all the FTD signs he exhibits. eg - Does bipolar cause people to put things in weird places, ask where things are every day, binge for months on same weird food secretly in his bedroom, spend most of every day making lists, show zero interest in life around us, suggest off the wall complicated ways to do something that takes seconds to do, scream if interrupted while doing a task because he gets confused, get lost in store or driving familiar route - and go totally off the planet after prescribed and taking Alzheimer's med...?
Every better aging clinic says an accurate diagnosis is required to design a proper treatment plan and for the family to plan through to end. I contend that specialists 5 years ago, those who knew him best and watched his decline over 10 years, were correct: FTDbv. No other disease experts claim it could be include behaviors as bizarre and typical as FTD - and he has all of those - every single one.
The last top neuropscychologist (with a prestigious head position in her state), who also said she could not diagnose my LO, said she could not rule out FTD, yet did not refer for all the tests to rule out FTD -- actually asked me, I kid you not, why a diagnosis was important. (Good grief.)
She also said because his condition prevented reasoning with him, she could not counsel him, but could help me cope through to his end because it is so tough. Why can't anyone reason with him? End of what? I need a dx like everyone else does for their LOs.
Does anyone here by any chance know a sympathetic, independent, geriatric specialist who would likely refer my LO for the 2 to 3-day comprehensive test at the link below, that rules out FTD? So far, despite repeatedly saying they "cannot rule out FTD" ( due to his many signs of it), even UCSF heads have failed to even suggest all these tests that do rule it out.
KDD, if you'll go to the top of this page and click SEARCH and then enter FTD you'll be taken to dozens of threads where spouses here have discussed FTD over the years. Some of the discussions deal with inability to reason with a spouse with FTD, others deal with life expectancy, which are topics that your last top neuropscychologist alluded to. As for needing a dx, very few of us here were ever given a definitive dx of whatever dementia variant our spouses were dealing with. Knowing doesn't seem to alter the outcome, although it might suggest medications to avoid and others to try to modify behavior.
KDD So sorry you are going through this. My husband was diagnosed with Vascular dementia and early Ad. he was also diagnose with the POSSIBILITY that it was, bv FTD. The vascular was diagnosed definitely because of an MRI as was the AD, but not the bv FTD. I was told that his behaviour and symptoms were bv FTD but I was also told that the only deficit diagnosis would be give if, when he passes away, they do an autopsy. I am trying to spend more time with him and I am finding that a definite diagnosis is not be so important. It's hard to watch this disease eat away at our relationship and our health. I spent the first four years on this site trying to get answers that I could not get until an autopsy so I am just trying to make the lives we have now to be the best they can be. He is very hard and abusive to me but some days he is very sweet. I'll take what nice behaviour I can get and enjoy it. So many of the folks on this site kept telling me "It's the disease not him." They were very right.
The main reason to try and rule out other dementia or rule in FTD is medications. AD medications are not recommended for FTD which you probably know from your research. Has he had an MRI to check the brain? My understanding it will show shrinkage in the front temporal area if it is FTD (but maybe not until later in the disease). The fact he did have a bad reaction to the AD medications would add to the thinking it is FTD.
It is possible he has mix dementia which is not uncommon. As for the exact diagnosis - there is no way to be 100% sure. But if it is leaning heavily towards FTD, then it is important to not give them AD drugs.
Have you gone to the https://www.theaftd.org/living-with-ftd/newly-diagnosed/ somewhere they have a message board for FTD but can't remember the site which I am sure others are here.
The basics is: it gets very frustrating when you can't get a straight answer but we all must understand there is still so much they don't know. Many can ace the MMSE like Joan's husband did even though they can barely function. It all depends on the way their brain is affected and like your husband, high IQ and great test taker.
KDD, check out the FTDSupportForum.com. It is an excellent source of help and support with an international membership and an easy to navigate message forum with lots of topics. You will need to register as the site is very protective of privacy. I don't contribute much but I have read for many years and found it very informative.
Carol beat me to the ftdsupporforum recommendation. I am quite active there.
Your LO needs a complete neuropsych exam. Tests that emphasize memory are not worthwhile. The MMSE is worthless in this case, my wife did better on it every year until she got a perfect score. She was very familiar with many of the neuropsych tests but that didn't help her, she knew she did poorly after the battery of tests.
It is true that a number of conditions can produce symptoms identical to FTD. I The Neuroscientist Who Lost Her Mind the author describes her behavior that results from brain tumors, all I could think of was how that was classical FTD behavior. She also mentioned how her behavior was similar to someone with FTD.
Unfortunately your husband's knowledge won't help him. It is unlikely that his knowledge of brain disfunction will allow him to make a link between his own thinking and that of someone with FTD.
You are right, you need to rule out other causes. Some are reversible (though permanent damage can happen if not treated in time). Charlotte is correct in that a diagnosis can lead to better treatment of symptoms and to help avoid use of inappropriate medications.
Where are you located? If you are within distance of Baltimore I strongly recommend Johns Hopkins University Hospital. They have a FTD Clinic (I know people who have been very happy with it). My wife saw Dr. Argyle Hillis, a neurologist with a very good bedside manner. Many neurologists are not good with people, Dr. Hillis was a speech pathologist prior to becoming a doctor which helps explain her superior people skills, plus her grandmother had FTD. While my wife's scores on the MMSE improved her scores on empathy testing conducted at JHUH dropped each year, supporting the FTD dx.
Thank you all very much. I spent quite a bit of time writing a detailed reply to you, clicked send and the whole thing disappeared. For now, I;ll just say thank you again. You replies were very helpful.
My husband was diagnosed with dementia, probably Alzheimer’s they said, but he didn’t fit the patternWONT GO INTO ALL OF THE DETAILS, I AM A Medical Professional, he was an executive with a.very high Iq. I had him tested usually yearly, nobody would look at any part of the test other than he reports marital problems so hard to tell how truthful wife Is! He was so good at conning them. He lasted 26 year, along with Parkinson’s and ALS. The only time I saw or heard the diagnosis was on his death certificate. Cold comfort in more ways than one. Do t worry about the professionals ever seeing it, they won’t and go with your gut and knowledge of him in makin decisions for him.
Ps they insisted on giving him. Aricept. Was a little reluctant to argue about it. They finally took him off the last year,, he became brighter, remembered more and was more like himself. I took him to a prominent university with a beautiful Dementia unit. He was very Hugh functioning. We were sent to marriage counseling a number of times. We tried it, but it was ridiculous. The therapist believed everything He said and told me I was hurting his feelings because I said something different, taking care of some especially demented patients is a character builder.