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 Frontotemporal Dementia 
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Frontotemporal Dementia
One of the nurses at the SNF yesterday was describing to me some symptoms that her boyfriend [55] has been displaying [specifically, abrupt mood changes, personality change, OCD] and wondered if Derek had shown these signs early on. After listening to the features she described I suggested she look up FTD as it sounded more like that than LBD. She's trying to get him to a neurologist but, of course, he doesn't think there's anything wrong with him. When I came home and looked up the symptoms of FTD it strengthened my suspicions about her bf. My next door neighbor's husband has late-stage FTD. Supposedly, it is 'rare' but I've personally known five women whose husbands have FTD and now this possible case! These men were all in their 50's when they developed it. Scary.

One thing about FTD, though, is that it usually can be diagnosed radiologically.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Dec 18, 2011 11:19 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Frontotemporal Dementia
Diagnosing FTD radiologically is like diagnosing anything else radiologically. Most neurologists don't go by imaging.

FTD is the second most common dementia among the middle-aged. Among the middle aged, the second most common dementia is either LB dementia or vascular dementia, depending on which source you look at.


Mon Dec 19, 2011 11:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Frontotemporal Dementia
My next door neighbor's husband was apparently diagnosed with FTD based on an progressive shrinking of the frontal lobe along with personality changes.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Dec 20, 2011 12:11 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Frontotemporal Dementia
But there can be frontal lobe degeneration in lots of disorders...


Tue Dec 20, 2011 2:45 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Frontotemporal Dementia
His neurologist [and, I should add, a team of neurologists] has diagnosed his condition based on radiological as well as cognitive and behavioral symptoms. You may dispute it if you wish.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Dec 20, 2011 10:42 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Frontotemporal Dementia
My comments were focused on whether imaging can provide a definitive diagnosis of FTD. While imaging may be helpful in some cases, it's certainly not definitive. Probably the diagnostic accuracy for FTD is even lower than for LBD, if all the subtypes of FTD are included. If looking at the behavioral variant only, I doubt that the accuracy approaches 50%. Several in our local support group have been found to have had FTD upon brain autopsy but during life were diagnosed with atypical parkinsonism disorders (DLB, PSP).

The best article I've read on FTD is this one from several years ago in the SF Chronicle:
http://www.sfgate.com/cgi-bin/article.c ... NSC8F1.DTL

I may've posted this link here before if someone mentioned wanting FTD info. The article says:

Consequently, detecting FTD remains more of an art than science. Magnetic resonance imaging and CT scans can help rule out a brain tumor and reveal cerebral atrophy, but these and PET scans "are not a means for making a diagnosis," says Tiffany Chow, a neuroscientist at the University of Toronto and a speaker at UCSF's FTD conference in September. Neuropsychological tests can help, but Chow says that nothing is more
effective than a complete examination and history of speech impairments and/or behavioral changes.


Wed Dec 21, 2011 5:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Frontotemporal Dementia
Yes, it is an interesting article. It would seem in sharp contrast to this one from the NIH archives: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001752/.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Dec 21, 2011 6:42 pm
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Joined: Thu Jan 14, 2010 2:40 pm
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Location: California
Post Re: Frontotemporal Dementia
I was watching a PBS program on FTD a while back and Dr. Brad Boeve clearly said that it was the 2nd leading cause of dementia [perhaps I missed the part about it being related to middle age]. However, what he said stuck with me because I had read that LBD was the 2nd leading cause of dementia... Any thoughts?
Roxanne

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My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?


Wed Dec 21, 2011 7:17 pm
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Location: WA
Post Re: Frontotemporal Dementia
I think there is some confusion about that. It may be the second most common dementia in middle age but it's not the second most common form of dementia.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Dec 21, 2011 7:19 pm
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Joined: Wed Dec 15, 2010 3:18 pm
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Post Re: Frontotemporal Dementia
My father has what appears to be a mixed dementia of FTD and Lewy Body Dementia - I was able to find one research article online about this and that article said that this presentation pathologically (when autopsied after death) has an entirely different presentation than either of the two individually.

My father's MRI and PET scan both came back showing only "normal age-related shrinkage". However, his 9 hour battery of neuropsychological testing revealed pronounced fronto-temporal lobe function reduction. He has a baseline IQ in the high 90's and lost one-third of his IQ in the functions related to frontal lobe - but because his functioning still rated in the 60 %ile, they found him only to have "mild cognitive impairment". Even though the rest of his intellectual functioning was still in the mid and high 90 %iles. Ridiculous.

This testing and evaluation was done at the Taub Center for Research of the Aging Brain at Columbia University. Extremely disappointing.

They failed to take into account ANY of the clinical data I reported, such as his personality changes, his fluctuating cognition, his deterioration in self-care that led to him now having only about 6 teeth left when he's only 71 years old, his not having showered in years, etc.

I say all this to say that not all FTD can be radiologically diagnosed.


Mon Dec 26, 2011 10:22 am
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Location: WA
Post Re: Frontotemporal Dementia
I guess the major problem in researching and diagnosing dementia is that data must be measurable and so much of what we see in our LOs is observable but not quantifiable/measurable. How does one test for personality changes or hallucinations? What kinds of tools can be used? Attempts have been made but seem to fall short as so much of dementia is qualitative rather than quantitative.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Dec 26, 2011 10:35 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Frontotemporal Dementia
Qualitative data is so difficult to measure, and the hard sciences really have not wrapped their heads (no pun intended) around these obeservable behavioral changes. Perhaps an exhaustive list of the observable changes in our LOs, with a timeline of when these changes occur is the most useful tool we have for now. But wouldn't it be a help if all doctors treating our LOs had such a list and used this along with quantitative testing to help with dx and treatment? How do you measure "grouchiness", "irritability", or "rage" for example? Close friends' and family members' observations should be taken into account along with those things that can be measured, and I'm betting that a lot of times they are ignored. BTDT! Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 26, 2011 12:30 pm
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Joined: Wed Dec 15, 2010 3:18 pm
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Post Re: Frontotemporal Dementia
Here's the abstract for the article to which I referred:

http://www.ncbi.nlm.nih.gov/pubmed/18797258


Mon Dec 26, 2011 7:33 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Frontotemporal Dementia
The plot thickens! Just when we thought it couldn't get any thicker. Having a combination of LBD and FTD has got to be about the worst thing imaginable!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Dec 26, 2011 8:04 pm
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Joined: Wed Dec 15, 2010 3:18 pm
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Post Re: Frontotemporal Dementia
mockturtle wrote:
The plot thickens! Just when we thought it couldn't get any thicker. Having a combination of LBD and FTD has got to be about the worst thing imaginable!


Welcome to my world :shock:


Wed Dec 28, 2011 9:42 am
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