Your assertion is not quite accurate. Neurologists can definitively diagnose ftd before death. I think what you mean is that they can't determine specific pathology until autopsy: Pick's bodies, TDP, Tau, ALS pathology, PSP, etc. and if they conduct a genetic test they can determine the errant gene such as C9orf.
They can and do diagnose ftd with certainty before death, just not the specific type of ftd. There are many.
It's not my assertion, but rather that of the Association for FTD, the Mayo Clinic and other reputable medical experts. What I provided are direct quotes. From Mayo Clinic, for example: "No single test can identify frontotemporal dementia, so doctors attempt to identify certain characteristic features while excluding other possible causes.The disorder can be especially challenging to diagnose as symptoms of frontotemporal dementia often overlap with those of other conditions."
"The current lack of biomarkers for FTD contributes to diagnostic delays and errors.
That said, no one is debating the existence of FTD nor the tragedy of this progressive terminal illness. I'm deeply sorry that your husband, you and family are going through this, bvFTD.
Kikki makes an important point, however, about the value of each person's story and experience. We are not doctors or therapist for the most part and even if some here are, this is not the place for diagnosing others. I have found the people on this board to be thoughtful and intelligent. If a spouse is exhibiting the psychological and physical symptoms of FTD, or any other disease, and an LBS has any influence with their spouse, they will encourage them to pursue medical assistance. It is, however, our spouse's life and our spouse's decision as to what they want to pursue regarding their own wellbeing. One of the hallmarks of MLC is that our spouse does not want our interference or opinions and may do the opposite just to exert their independence, so it can actually backfire and keep a spouse from getting useful help if we pressure.
Phoenix