I want to scream and cry

So often it is a diagnosis of non specific which is beyond frustrating. The reason for progression of atrophy of the left temporal lobe is often unknown, but the results from my understanding are the same and follow the pattern of dementia. Our journey started with possible MCI with depression. Mild shrinkage of the hippocampus. We have never pursued more testing and he has progressed over the years. Unfortunately you may never receive the concrete answer you are looking for. I’m really sorry you two are going through this at such a young age.

there’s so much they still don’t know about diseases of the brain. My DH’s first diagnosis was white matter disease probably Vascular Dementia. Over a year later after I continued to send the Neurologist his behaviors, she looked at the last CT scan and sent me an email stating it was “consistent with Alzheimer’s-Posterior Cortical Atrophy. I know how frustrating it is not to get a definitive answer. Sadly a diagnosis won’t change the outcome.

My DW was diagnosed in October 2020, the pandemic delayed this somewhat. Semantic Dementia (SD) is pretty rare and not well studied. I have read everything I could find on it. The studies that do exist indicate that it is not likely to be caused by genetics, less than 5% of cases could be possibly linked to genetics. My DW had no history of dementia in her family, and I have no history in my family as well, so we had no knowledge of dementia and it’s onset. This made it confusing when symptoms started showing up in about 2018-2019 when she was in her late 60s. Only in hindsight can I see the early warning signs, particularly because in the early stages the cognitive issues are not quite like the more common dementia types.

My DW was first diagnosed at a university medical center which gave a preliminary diagnosis of SD, but they said they needed the PET scan for confirmation. They also wanted a confirmation from an expert in rare dementias at a major national medical center. They thought it would take six months to get this appointment. I got a call from the expert in just two weeks and he was willing to see my DW within days. In the end they confirmed the diagnosis in a 14 page report. They seemed as interested in my DW as a case study, and had a post doctoral student participate in the assessment.

My DW’s progression has been very rapid, exceedingly so according to her neurologist and subsequent hospice nurses. This is somewhat surprising to me as she was very healthy, fit and active and remained so up through about mid Stage 6.

SD is not generally associated with behavioral issues like some other FTD variants and this held true for my DW. There were certainly times when she was agitated and anxious, and occasionally just bit oppositional due to her confusion about what was going on. But she was never aggressive or angry. She could be challenging to deal with only because she was often feeling like she needed to do something or go somewhere that she couldn’t really define let alone articulate.

There is of course much more I can tell you, and would gladly do so. But maybe it’s more useful to address any immediate concerns you have rather than me droning on endlessly.