FTD or ALZ

CStrope

My husband was diagnosed 2 1/2 years ago with Alzheimer's, but was already scoring a 17 on the MMSE, (so basically pretty far along).  We recently decided to switch to a local doctor because his geriatric doctor is an hour and a half away, and difficult to get a response from on short notice.  When digging through all of the doctor's notes in preparation for the switch to the local doc, I found where he stated "After looking at the PET and MRI again I feel that DH most likely has FTD and not ALZ".  This has ever been discussed with me, but totally makes sense.  I have spent the last 2 1/2 years following the path of an ALZ caregiver.  I know they are both dementias, but the behavioral issues with the FTD are becoming more and more troublesome.  

Has anyone else had a diagnosis that was suddenly changed like this?

Vitruvius

CStrope, I believe at one time you noted your DH had the logopenic variant of primary progressive aphasia. This is a form of FTD, not Alzheimer's. The only reason I remember this is because my DW has the semantic variant of primary progressive aphasia aka semantic dementia (SD). These variants are rare on this forum. 

I know you are now concerned with developing behavioral issues but I hope they don't develop like other variants of FTD, specifically the behavioral variant. 

My DW's SD presented few serious behavioral issues, they were rather minor compared to someone I knew with the behavioral variation of FTD. DW had many delusions and some hallucinations but they were rarely troublesome. Of course when they did cause her distress it was pretty stressful for me, but that was infrequent. Dealing with her near constant state of delusions was not easy but was not like the hyper aggressive behavior seen with the behavioral variant. 

I wish you luck.

ElCy

Just recently docs are suspecting DH has FT and Alzheimer’s.  He had all the signs of Alzheimer’s until he developed a UTI that caused aphasia and behavioral issues. The aphis awful as I can’t understand anything he says. The behavior issues have resulted in 40 days geripsych, 12 ECT sessions, back to MC for 6 days, back to ER and 1 more week in geripsych where we were told he’d be so drugged to control behavior that he would be on hospice, back to MC for 3 days, kicked out to ER last night (they were supposed to call hospice instead of 911 but didn’t). Currently still in ER trying to figure out what happens next.

Michael Ellenbogen

Yes but it also could be both and will not know untill they do a bioposie after death.

GothicGremlin

> CStrope, I believe at one time you noted your DH had the logopenic variant of primary progressive aphasia. This is a form of FTD, not Alzheimer's.

I remember this too, Vitruvius, mostly because my sister has this as well. She also has Alzheimer's.

CStrope, it's possible your husband also has both. The doctor looked at Peggy's MRI and her PET Scan to come up with the determination.

  

CStrope

Thank you to those of you that chimed in. Yes, when my husband's doctor diagnosed him with Alzheimer's, he called it logopenic variant. Lately we have been dealing with extreme delusions. He "talks" to people for hours some days. He never seems to be upset with them, but has full on conversations that strangely are much more understandable than the conversations he attempts to have with us real people!!

CaringMate

In my experience, many doctors who are not specialists in dementia and the many variants will "label" most patients with Alzheimer's dementia because across the board behaviors can overlap and they are mostly unaware of the differences. My partner was diagnosed with bvFTD only after I provided detailed lists of his many bizarre behaviors which did not follow the protocol for Alzheimer's. Ultimately as the disease process progressed he show signs of both types of dementia and it became a mute point. FTD patients show signs of the disease much earlier in their lives but mostly go undiagnosed because they can still function and "act normal" in a way that Alzheimer's patients can't. It is a puzzling disease and much more difficult for a caregiver because they maintain a level of anger and aggression that can provide a very unsafe environment for the caregiver. FTD requires a different medication protocol than Alzheimer's dementia and it is important to get an accurate diagnosis if there is any hope in getting the person the proper and necessary care.