We went to a new neurologist yesterday. Old doctor told us DH has dementia of the alzheimers type. For over a year now we thought he had alzheimers. New doctor says "He doesn't have alzheimers. He has Frontal lobe dementia". I've read numerous books, searched the internet and have been all over this website for information on alzheimers and I really belive DH has EOAD. He just doesn't fit into this FTD. He has had no behavior changes. He's as sweet as pie. No family history. Dr made his diagnosis because of his inability to express himself and his age. Am I to continue thinking his progression will follow that of alzheimers? He is at late stage 6 on the Fisher scale. Or does FTD follow a different scale? I can't seem to find much information (that I can understand) on FTD other than it progresses faster. Dr. also said that no meds will help. He gave me a print out on FTD but I got nothing out of it.
Mag--remember, they are all pretty much guessing. Unless your husband has had the PET scan (expensive) or spinal fluid tap (usually done in conunction with clinical trials) there is no definitive way to dx AD at this point. I don't think there's a definitive way to dx FTD either. I'd say if his symptoms have been following the Reisberg Scale on the Fisher Center site, the new neuro may be wrong (that scale is for AD). Others here whose LO's have FTD may have more insight. Also, the correct dx might be a combo of dementia-causing diseases.
as with many of us here, our spouses have no real definate diagnosis but a combo typethinking due to overlapping symptoms. ie mine has vascular dementia *confirmed- but also possibly combo of AD. i also think maybe lewy body due to the acting out of hallucinations all this time. the outcome is the same, the only difference would be what meds they can tolerate. FTD usually doesnt take kindly to the reg AD meds but i know many here have tried some of the other meds successfully.
Here is some information which I had gathered about Frontotemporal Dementia (FTD) vs. Alzheimer's Disease (AD): http://downtherabbithole-mary.blogspot.com/2010/12/frontotemporal-dementia-ftd-vs.html
It is important to distinguish between the two, because medication prescribed for AD can worsen behavioral symptoms in FTD patients.
Both doctors are neurologist. I've read the posts here on FTD. One thing I did find was that the later stages of alzheimers and FTD are about the same. I'm confused over this diagnosis but I'm not going to obsess over it anymore. My eyes are tired from searching the internet and reading the same thing over and over. The information isn't out there like the information on alzheimers. The way I look at it - it's dementia. The end result is the same. I take one day at a time.
Mag, dementia is dementia and the different types typically have the same symptoms in the later stages. It is important to distinguish between FTD and AD because the meds used to treat AD can cause severe problems with FTD patients, at least in the early-mid stages. DH was originally dx'd with "pre-senile dementia" and no specific dx of any specific type of dementia. He reacted very badly to aricept (threatened to kill himself) and then badly to Namenda (threatened to kill me). He actually was fortunate enough to be evaluated by Dr. Reisberg himself who dx him with FTD and possible mixed dementia (FTD/AD). DH has alays had behavioral issues from pacing, aggitation to aggression and violence. Once we got the FTD dx, they prescribed seroquel which has helped with the aggitation and aggressive behaviors.
My husband has been diagnosed with FTD and he has never been aggressive or violent. He tends to have obsessive compulsive behaviors. He is on aricept and namenda with no adverse effects. He also take seroquel and cymbalta for agitation. He has no family history of any type of dementia. He is now 62...was diagnosed at 58. If you would like more information you can also check out the website:
Mag-my husband did not progress rapidly at all. He was actually on hospice for 4yrs. It was his terrible response to aricept that made me question his Dx of AD. He did very well on Seroquel. Depakote is another drug that he did poorly with. FTD is a monster.
Mag---I was convinced my husband had FTD, based on some behavior issues (but like deb above---more obsessive compulsive, never violent or aggressive), but his neurologist ordered a petscan and said the "celluar activity" appeared more like EOAD (my husband was 53 at the time). Now even the neurologist will admit he may have a combination form of dementia, but since my husband is now is in stage 6/7, it really doesn't matter anymore, other than we are still aware that his reaction to some drugs as mentioned above needs to be monitored. (For example, about 4 years ago we tried depakote for 3 days, and it was a disaster!! One of the worst weekends ever!) One reason in my mind for the FTD diagnosis is that he had a car wreck when was @ 23 with a probable concussion, and the research on football players with concussions who later develop FTD is pretty compelling to me, particulary because there is NO alzheimer's in my husband's family. So I encourage you to research both diseases, as many of us apparently have done, but remember every dementia patient is different. We are 6 years into our journey post-diagnosis, with rapid decline, but I also realize that it could go on for years.
Mag, if it is a concern to you, perhaps you should go to a specialist in memory disorders, or at the very least get a third opinion. You are correct, the end results are all the same.
"Dr made his diagnosis because of his inability to express himself and his age"
SIGH . . . . Doctors who use age as a criteria to make a diferential diagnosis in this dementia world have been harmed by the stupid, arbitrary 'age 65' line that was used to differ between AD and EOAD. Another reason for the medical community to dispense with it!
Hey Dr, look at the symptoms! They are subtle and may not happen in your office. The family knows the person better than you (if in doubt give them a list about what to look out for) and then perhaps in the future we can look forward to objective testing.
Another thing is that FTD has different types and I was just told by the neurologist that my husband had frontal lobe atrophy more on the left than right. He has lost most of his language capabilities which makes me believe he has the PPA type of FTD. Really doesn't make a difference....they all end the same way.
If there was an absolute test that would determine exactly the cause of dementia, the vast differences would be easier to understand and so much easier to treat. The diagnosis is mostly an opinion or a guess by many good neurologists or doctors, but it cannot be absolutely certain until an autopsy is done. I spent several years researching every form of dementia, and found that sometimes it is possible to not only have eoad, but also a bit of FTD, mixed with a bit of vascular dementia, etc. I really believe it is possible to have a mixture of all, and depending on where the damage is occurring, the end result is pretty much the same. Keep in mind that most neurologists spend less than an hour observing and testing their patients, and a lot of their opinion is based on previous patients who had similar symptoms. Experience often guides them, just like a mechanic who will fix a car based on his prior experiences..Unless he is completely unbiased, his opinions will often be influenced by prior diagnoses, and other patients who exhibited many of the same symptoms. In the long run, I believe that eoad can become ftd, if the plaques and tangles become more predominant in the frontal lobes. Often, the parieto temporal lobes will also be affected, and each side of the brain will control different bodily functions. For example, the left lobes will affect speech, language, perception, behavior, and some motor control, and we tend to forget that the brain is deteriorating at different locations and at different rates...As the damage spreads to other areas, new symptoms become apparent, and that is why there is such a variation between anyone with dementia. Some lose memory, while others will retain it....some have behavioral problems, anger, etc. while others will not. Until doctors are able to do autopsies on living patients, I seriously doubt that we will ever obtain an absolute correct diagnosis. And as for medications, each patient seems to do better with some medications and others do horrible. I hate to say that it is trial and error, but finding the right meds is probably the biggest challenge, and can make a huge difference in the care of a patient. I advise anyone to really evaluate the benefits and side effects of all medications, and to communicate this to the doctor. Never continue medications just because the doctor prescribed it...If you see no benefit from aricept, namenda, or excelon, then they are probably not working, and the money would be better spent on alcohol, beer, wine, chocolate, etc....
My plan is definitely to have a brain autopsy on my husband. I have the paperwork and my daughters know that if something happens to me first, that is something I am passionate about. Check with your doctor(s) about that. My understanding that in our case the fee for the actual autopsy is waived, although we will have to cover transport costs.
<<Do any of you think you will have an autopsy done on your spouse so that you'll really know what was wrong?>>
Mag, my DW's brain was autopsied in connection with a "Late Onset AD Genetic Study" that she had volunteered to participate in. And the autopsy results confirmed damage to those particular portions of her brain that had been predicted, based on observed symptoms. The study objective was to recruit several thousand families where multiple siblings were affected by probable late onset AD, and then collect blood samples from them to see if they could single out any genetic markers. I don't know what conclusions the study may have come up with.
Mag..I donated my dw's brain to the Mayo Clinic Brain Bank....and after a 4 month study, the conclusion was "Hippocampal Sparing Alzheimer;s"... I had hoped that the brain bank would have paid me interest, and I was hoping to keep it there until I needed it.......alas..no interest...but it was interesting.
Oh, yes, Mag, autopsy will be done and I cannot credit myself for wanting that. Somewhere between MCI and FTD dx, H said that he wanted to donate his brain so that someone else might hopefully not have to go through this "process".
H too has been through multiple dx. Starting with MCI, then FTD, then to "generalized cerebral atropy" then back to FTD, then to EAOD and now to AD. Often on these boards questions are formed how (whatever) since dx and my thoughts are which dx?
He has had the behavioral disturbances associated with FTD and from the scans the specialist showed me, that clearly was the case; the frontal deterioration was beyond shocking, to me. It has since spread and I think that is the reason for the expanded dx.
To that extent of my understanding, I think that H's is the opposite of what Frank, above, described, that FTD has become EOAD. How it has become AD considering H is 52 I don't get. But that is not even on my long list of worries, which are 1.) how long? and 2.) how can I afford this?
In H's case there have been multiple docs: a primary N, a specialist N, a neuropsychologist, an academic neuropsychologist, and a neuropsychiatrist. I don't blame them for anything. H has received a lot of attention, mostly I think because he is "atypical"; especially because of his age and former cognitive abilities. His responses to meds are atypical as well. They can't figure it out so how can I possibly come close?