Post for Lgb35 on Semantic Dementia

Vitruvius

Lgb35 I saw your recent question on how to get info on Semantic Dementia (SD) in another thread but I thought answering there might get lost.

"we received confirmation today that DH also has Semantic Dementia. When I asked for resources so we know what’s next and how this form progresses, I was told to look up FTD association. It is very hard to even find information on this variant. They suggested getting a social worker. Where do I go about finding one? Have any of you done this?"

As for info on SD, as you have found there isn’t much as it is a fairly rare dementia type. It is technically also called Semantic Variant of Primary Progressive Aphasia, which in turn is a sub variant of FTD. Here is a staging table from Tam Cummings on FTD variants, there is a column for SD. 

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63d3f44b808ed66f374e8604/1674835020189/FTD%2BTool.pdf

Here's some info from UCSF, which has a group specializing in rare dementias. An expert there provided the definitive diagnosis for my DW.

https://memory.ucsf.edu/dementia/primary-progressive-aphasia/semantic-variant-primary-progressive-aphasia

Here is "A Patient’s Guide to Semantic Variant Primary Progressive Aphasia (svPPA)", also from UCSF.
https://memory.ucsf.edu/sites/memory.ucsf.edu/files/wysiwyg/UCSF%20Dementia%20Patient%20Guides_svPPA_11-3-17.pdf

I found it all informative but somewhat helpful. The one important thing about SD is that it is generally not associated with behavioral problems thankfully and I found this true for my DW. She was still often anxious and a bit agitated and confused but not really difficult.  It has certainly been stressful but not nearly as challenging as dementias with aggressive behavior. 

Although different in the early stages, once my DW reached Stage 6 the issues and progression were very increasingly similar to AD. 

I’m not quite sure what the suggestion on getting a social worker was about.  Even the neurologists we saw knew very little and referred us to a national expert for more information. Nobody else we saw knew anything about SD and always framed any discussion in the context of AD. Quite frankly the social workers we dealt with were always more interested in supporting the caregiver rather than the PWD. Not to say that they wouldn’t be helpful to you, but I doubt they could provide any insight into SD. 

As always I am willing to answer any question you have about SD. As you know my DW is well into the last stage so we’ve been through a long journey in SD.