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My last question involved my brother. None of you held back, and I appreciated that. I know I “let him” move in. Honestly, I felt I had no choice at the time, but that's past history. I’ll move on.


He has finally gotten his appointment with a neurologist. He finally went for his MRI, which, with his symptoms (primarily periodic episodes of aphasia), the neurologist suspects FTD. He talks over the doctor and she was hard pressed to have him hear anything about his diagnosis.


If you have experiences with FTD, would you mind sharing? Thanks in advance for your time.

If you click on ‘resources’ at the top of the screen, then click on ‘caregiving topics’ then on F for Frontotemporal, you will find 14 professional articles, 9 old discussions and 149 old questions on the topic. As well as new answers, the chances are that there will be lots of useful information from the past. Good luck!
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Reply to MargaretMcKen
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Honestly, my mom was diagnosed with Alzheimer's and Vascular Dementia, but this sounds sooooo much like her.
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You can find a lot of information at AFTD.org.

https://www.theaftd.org/
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Dixcasa: My very bad late ex husband (threw me and his 3 y o daughter to the curb) passed away from FTD. He lasted a year after dx.
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Reply to Llamalover47
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My husband was officially diagnosed with FTD in February 2019. I was able to care for him at home until March of 2022. It got too much for me to take care of. He refused to bathe and would only eat pizza and ice cream. It was a struggle to get him to change his clothes. He's 6'2" and at the time weighed 228 lbs. I'm only 5'3" and it was just too much for me.
We moved into a memory care unit. He had trouble adjusting so they sent him out for meds adjustment. When he returned he pushed another resident and so them told us he had to leave. We found another memory care and had the same issues. He was sent that the Ohio Psychiatric Hospital for meds adjustment. He ended up in the hospital with a UTI and sepsis. He was in a hospital for about a month because we couldn't find any place that would take him due to his behavior. We eventually found a SNF that would take him. They had a memory care unit. He's been there ever since. He no longer walks in his own, not can he feed himself. He is pretty much non-verbal (although he will say a word of r two about once a month). We no longer see his eyes light up in recognition of us. He is still quite strong and can walk a few steps with a lot of assistance.
He now has dysphasia and is on pureed food. He had developed TD from the meds he was on.
He's no longer the man I married but he's still my husband and I love him. I try and go see him everyday.
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Suzy23 Feb 4, 2025
My dad also gradually stopped eating more and more foods until he was eating only ice cream. And he also became resistant to changing his clothes or showering. I am sorry for all you have gone through and admire that you love him and still visit him almost every day.
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So sorry to hear this. My late husband had behavioral variant FTD. If possible, find a neurologist who specializes in cognitive disorders. My husband was a college professor and came home one October day with a letter from the academic dean. He was put on immediate sick leave, but to continue getting a paycheck he needed to get a complete physical from his PCP, and see a neurologist they recommened. They continued his pay for the rest of the academic year, but he had to resign then unless he showed no signs of cognitive decline. (He did resign,) The neurologist ordered a CT scan and and MRI. The CT scan and MRI results indicated either early onset Alzheimer's or frontotemporal degeneration. But the neurologist was just a generalist and recommended two neurologists from academic medical centers (one local and one about 100 miles away). I called both for appointments and they both had long waiting lists, but we could get on their cancellation lists. in the meantime, my husband saw his PCP. The PCP said, "The wait is ridiculous. I have all his records, too. I'll send them to these two specialists and add things that could make him an "interesting case"....a guy who was a college professor for over 26 years and now cannot perform in the classroom." That did the trick. Within 2 weeks, we got calls from the neurologist's office in both places that they had cancellations. Fortunately, the local one got us in at the beginning of a week. We decided to see him and if we had any doubts we'd go to the one 100 miles away. We absolutely loved the local neurologist (he's a nationally and internationally-renowned clinician and researcher), but relates well to everyone. On his online bio, I saw that he did his internship and neurology residency on Air Force bases and had to work in an Air Force hospital for several years for the college and medical school education they paid for in exchange for serving in the Air Force for 4 years after internship and medical school. He's also the medical director of the long-term care center my husband eventually lived in. I called the other neurologist's office to cancel. The person I talked to said I'd just made someone on their waiting list very happy. If you are a member of a church, synagogue, mosque, or temple, also see a clergy member there. Our priest told me this wasn't the first time he'd dealt with this and it sure won't be the last.
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Suzy23 Feb 4, 2025
My dad was also a college professor who was forced into retirement due to problematic behavior on the job due to what turned out to be FTD. Diagnosis can be very difficult. I know of some cases that go on for many years with no official diagnosis but FTD behaviors. It’s devastating.
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Hi Dixcasa—

I am very sorry to hear this. My dad had behavioral variant FTD. Sounds like your brother may have primary progressive aphasia variant, in which language is the first to go. Unfortunately, as time goes on, they tend to blend into one another.

I recommend two resources:

theaftd.org
ftdsupportforum.com

I am on the latter site with the same username. It’s a much smaller community than on here and all FTD caretakers. Very helpful and supportive.

Progression varies a lot between individuals. There is a lot of temporary down one step, back up to previous baseline, then permanently down and so forth. You will read the average life expectancy is 7 years, or 15 years depending on age at diagnosis. I know people who are diagnosed and stay relatively the same for many years, then suddenly decline. Others decline very rapidly. My dad was diagnosed at age 76 though in retrospect, had many symptoms in the years leading up to diagnosis, and he died at 80. But he had other conditions and also pretty much stopped eating or drinking six months before his death. Many FTDers are the opposite and gorge themselves nonstop on sweets and carbs. It was impossible to sort out what was causing what in his case.

When the neurologist gave my dad and mom the news of his diagnosis, including using the words “permanent brain atrophy” my dad found it entirely uninteresting and had no comment. It’s a very hard road no matter then timeline.

Best wishes to you.
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It is often one of the more difficult dementias to manage, with a somewhat unpredictable and volatile individual progression. Stress on the individual, because our own experiences here cannot/will not mirror your own.
The fact is that, if you are wise, you will not continue in care when it is clear to you that you cannot manage it, and placement is needed.

The internet is your friend here. You can begin by going to the top of AgingCare timeline, to the search bar, and type in frontotemporal dementia or FTD dementia. You will see many threads of past questions and answers.
The online information will be overwhelming in amount; be certain to check out reputable sites.

You should consider also any support groups you can find. Facebook surely as them as they do for everything. I would try them.

Wishing you good luck.
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MikeinTexas Feb 4, 2025
Is FTD same as vascular dementia?
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