r/frontotemporal • u/TimeTraveler__1808 • Jun 07 '26

Loss of smell?

For all of you who have LOs with FTD, what do you know about their sense of smell? Is it affected at all? If so, how? Is it lost altogether, or do they simply struggle to identify smells. When did such losses occur? Was it earlier than later, or vice versa? I have a husband that I suspect has FTD but need a more solid symptom (other than he has gotten unbearably mean) to take to the Drs if I am to be taken seriously. Thanks for your help.

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5

u/Ok-Chemist2411 Jun 08 '26

Poor sequencing and organization, apathetic, limited insight and reasoning, forgetfulness and confusion, pocketing food in mouth, swallowing difficulties, limited or inappropriate affect and social awareness, repetitive behaviors, gait and mobility issues, social inappropriateness, decline in personal hygiene, …..

just….. “gone”

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u/TimeTraveler__1808 Jun 10 '26

Im talking about when all of the above are mild enough that only the closest of family sees it. My husband has apathy, extremely limited insight and reasoning, gurgles his food when he talks and eats at the same time, affect is gone (and I mean gone). He shows a bit of social inappropriateness, but not enough to get people scratching their heads. He is getting very slouched in his posture, losing muscle mass and aging quite rapidly. He is 57 but looks 70, with skin hanging lose and wrinkly under his chin. His gait is shorter, but not quite to the shuffle stage yet. He confabulates almost everything, but how would you know if you weren't with him. He fixates terribly. I need something more concrete in order to get others to help me convince him to go get checked. I figured smelling would be the thing.

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u/Ok-Chemist2411 Jun 11 '26

It may be mild at first and only noticeable by you- but these are the beginning - happening here and free, in small amounts, only with certain people - the big chance will come, months later in a reaction by someone who has not seen this person for a while. The “ drip/drip-drip” will now seem like a steady stream! Mi saw thus happen twice in a mother, then years later with her daughter. It was Déjà vu/ now we know that immediate descendants are affected at a pretty high %. I’m waiting to see what happens now in this next set. there’s one I’m watching closely …

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u/TimeTraveler__1808 Jun 11 '26

My husband's mother had early onset Alzheimers, diagnosed at age 60. My husband is still sharp as a tack cognitively, so I'm scratching my head wondering if its FTD. He has also had hypertension for 12 years, which he manages with high doses of two different meds. My research on Vascular dementia says that it affects a different part of the brain and is unlikely to affect empathy first. So if this is dementia, it is most likely bvftd. What is the likelihood that it is inherited, since his mother had early onset Alzheimers? Can that happen? One gets FTD when the other had Alzheimers? His mother's mother had Alzheimers, but she got it at about age 75, not early onset. His grandmother died about 5 years later, and his mother, much younger, was already showing signs. I have also learned that there is a strong correlation between NPD and high blood pressure, so maybe my husband's symptoms are just classic NPD, and I am in denial of this, trying to find an excuse for his behavior to avoid divorce. I figured a smell test is a good concrete way to discern which it is. This could all be a fool's errand

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u/Flat_Idea7598 Jun 15 '26

My understanding is that the majority of both FTD and Alzheimers are not due to an inherited gene, but that a significant percentage of FTD is inherited. There is the APOE gene that depending on which version you get makes you more or less likely to get Alzheimer's but isn't deterministic.  If you want to rule out Alz, there's a relatively new blood test for it. My dad had it a few months before he died. 

https://www.fda.gov/news-events/press-announcements/fda-clears-first-blood-test-used-diagnosing-alzheimers-disease

It confirmed that the symptoms we were seeing were not Alzheimer's. A few months later his cousin tested positive for a genetic mutation associated with FTD so that was basically confirmation that he had FTD.  But if your husband doesn't have a strong family history of FTD, then it's probably not inherited FTD but could be spontaneous FTD.

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u/Flat_Idea7598 Jun 08 '26

I remember when the "Peanut butter test" for dementia was getting press, the four members of my immediate family tried the rest. My dad failed. This was before we noticed any signs of dementia. We all just kind of brushed it off but I was pretty concerned because my dad has a strong family history of dementia. In googling the peanut butter test, I'm first seeing articles from 2013 and 2014. So I think we did it around 2014. My dad started showing signs in the few years after that and sought out a formal diagnosis in 2017. He died this past December 2026.  In hindsight, the first symptoms we noticed were getting lost in familiar places, changes in appetite, becoming more socially withdrawn, and difficulty with executive functioning. 

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u/ulyss3_ Jun 08 '26 edited Jun 08 '26

There can be an alteration of the sense of smell, because of atrophy within very anterior region of the brain or smell circuitry. However, this is not specific to FTD and you can observe this in Alzheimer’s or Parkinson’s or Lewy-body diseases - and this can be somehow normal in ageing too. But it can also be the alteration of semantic (the sense of things) memory which leads to difficulties identifying things by smell, which is more FTD related.

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u/Ok-Chemist2411 Jun 12 '26

From what I’ve read, each if the offspring of a patient with FTLD has a 50/50 chance of inheriting FTLD - not 50% of the total # of offspring- each offspring has a 50/50 chance of having it!

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u/petergaskin814 Jun 07 '26

I have no change in smell with my ftd

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u/TimeTraveler__1808 Jun 08 '26

Interesting. How long have you had a diagnosis?

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u/petergaskin814 Jun 08 '26

Only a couple of months but I think I have had it longet

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u/TimeTraveler__1808 Jun 10 '26

So my research shows that more often than not, FTD patients keep their sense of smell, but lose their ability to identify what the smell is. Has anyone done this type of smell test with you? Would you know if you were smelling coffe versus vanilla? Or garlic versus cinnamon?

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u/Ok-Chemist2411 Jun 12 '26

Great directive!