I want to scream and cry

My DW had the similar results from a PET scan. That was preceded by hours of cognitive testing by both a neurologist and a neuropsychologist. With those tests they gave a tentative diagnosis of Semantic Dementia, also known as Semantic variant of PPA, a FTD sub variant. The PET scan showing lack of proper functioning in the left temporal lobe was considered a confirmation of that diagnosis. Now of course I am definitely not trying to diagnose your DH as I am utterly unqualified. I am just relating the conclusion made by doctors based on a similar PET scan result. My completely layman's understanding is that problems related to the temporal lobes indicate some variation of FTD. My DW, 73, is now in the very last stage, Stage 7f and they keep telling me it won't be long now, but although she hasn't opened her eyes, moved independently, or spoken a word in months, she refuses to give up it seems.

First off I have been told that Semantic Dementia is very rare. I have seen that my DW’s symptoms were not characteristic of the stereotypical AD symptoms in the early and mid stages. So I can see how it may be harder to diagnose. By the time she was in later Stages, past mid Stage 6, it seems most dementias are the same.

My DW’s problems started with word finding, just like you describe. Her diagnosis was delayed by several things as mentioned before. Or unfamiliarity with dementia being the main cause. Although otherwise healthy she did have hypothyroidism and one of the symptoms is surprisingly, temporary word loss. If the hypothyroidism is controlled then the words come back. So we spent some time getting her thyroid level in check, but the word finding got worse. She also did not have the typical memory or orientation problems of AD in the early stages, but she was beginning to have problems with executive functioning. She liked to bake, but she started having problems undertaking complicated recipes. It was then I came to understand there was a cognitive issue.

This was early in the pandemic and getting regular medical appointments was difficult. Her young regular doctor was useless and did not seem familiar with dementia diagnosis at all. My DW was given both a CAT scan and an MRI. The doctor’s conclusion was “normal brain shrinkage consistent with age” [she was 68 at the time]. This was clearly worthless.

So I was finally able to get her directly into the regional University dementia clinic, without even a referral. The doctors there were great and after hours of cognitive testing over two days, they suspected Semantic Dementia right away but as I mentioned before wanted confirmation from a PET scan and also referred her to a national university medical center that had a specialist in rare dementias. They provided me with quite a lot of info on Semantic Dementia and it correlated closely with my DW’s symptoms.

As her dementia progressed she had increasing problems with “concept” words as the doctor had pointed out. As an example when her birthday came she did not understand the concept of a birthday. It was not that she had just forgotten when her was birthday was. Her speech was judged to be “grammatically correct but devoid of content”. She began inventing words. Now to some extent this is true of other, if not all dementias, but it came earlier and more pronounced with her.

One thing that is different from your DH, is she did not have much problem with orientation. For example a little later, on our second visit to a doctor, she gave me proper turn-by-turn directions only having been there once before three weeks earlier, but she did so because she did not think I was the same person who took her there the first time!

I hope this helps somewhat and would be glad to provide more info if you desire.

I’m not sure you need a specific detailed diagnosis. He needs to be unable to work. Perhaps the Cleveland Clinic doctor can help with a general diagnosis of Dementia. Here’s what AI search says: Yes, the Social Security Administration (SSA) recognizes neurodegenerative diseases as qualifying for disability benefits, but the severity of the condition must prevent the individual from working. Specifically, the condition must be severe enough to prevent engaging in substantial gainful activity and must be expected to last for at least 12 months or result in death.