Calling all FTD Caregivers!

Thanks. I’ll check it out.

Thank you for the recommendation @CStrope. I’ve heard of the podcast, but haven’t listened to it yet. I’ll definitely check it out

@Jeanne C. love your hubbie’s funnies! We need those moments!

Hi,

My first posting here. My husband was diagnosed with dementia 2.5 years ago, although I 'd noticed changes at least a year prior. The MRI done at the time suggested frontal and temporal involvement as the changes were noticeable. I insisted on a PET scan for better imaging-that took 6 months to get done. Which clearly showed FTD. He knows exactly what he has, he was a doctor-Hospitalist. Which makes office visits interesting, as he likes to Showboat with other doctors, has said he's getting better (yep) or dilutes the reality of FTD with another disease, by claiming he also has a very rare condition (I forget the name-let alone how to spell it). Some of the docs he has trained or were co-workers. It's clear to me they're struggling to see how my husband has changed. Of course I'm hardly ever recognized in the office visits-like I'm a piece of furniture. Although, I will speak up if certain concerns are being ignored-falling can be an issue and I keep track of this, as well as any other changes in behaviors. Husband hates when I do this, but at least it's documented in the EMR, so that if a change in medication is needed, maybe someone will take the time to see what precipitated the need to do this. Otherwise, he's verbal-as long as the conversation is short, simple and one topic. Somewhat forgetful-which is increasing. Not allowed to drive or work. His face has become more mask like. Of course empathy has ebbed away. Has only had one severe aggressive episode a few months after diagnosis-might have been triggered by a nightmare. Loves anything with sugar in it. Sleeping at least 12+ hours a day-which I'm ok with. He's in his reality now, and why stress him out by insisting to be in mine? He does enjoy computer games-always has. So, right after his diagnosis, I made sure that all the computer gear was upgraded as much as possible. The games are soley computer based, no outside player/interactions. Some games are visually stunning-like Sky Rym. I'm glad he can play these games, as I hope it helps him feel like he has control over some aspect of his life after so much has been taken away by FTD.

We live in central Pennsylvania, near a large medical center-which is where my husband wanted to finish his career. If he was healthier-the care here is adequate. At this point, he's a complex patient (several other medical issues) the health system here for this is useless and we're going to start to go to UPenn Memory center-not only for him, also for me. This is not my first stint as a caregiver-took care of my mother with end stage cancer nearly 20 years ago-in Philly. Well, I thought that caregiving for dementia would be somewhat similar. No. Not at all. It's awful. So bad, that I'll drive to Philly 169 miles one way, just to have a modicum of improvement here for myself and my husband.

Glad there's a group here for FTD.

Thanks for the kind words!

What really grinds my gears, is after 50+ years of research, there's nothing to show for any tangible results for any form of dementia. We're still being told dementia is complicated-it is, but the same was being said for cancer. It feels like dementia treatment is somewhere in the Dark Ages compared to just about anyother disease that is affecting a large number of people.

Will be interesting if my husband will qualify for any research studies at UPenn. He's expressed interest in trying novel medication approaches.

Hi and welcome @1Artist. Sorry you're going through this. I'm newer at this but learning quickly. My husband was diagnosed in January (things were bad) and he's progressing at an alarming rate. In Fall 2022 I had no idea what was in store for us and now he's already at stage 6c on the FAST scale.

I listened to a podcast yesterday about genetic research that's being done around FTD (thanks to @CStrope) and was very surprised at how little there seems to be that's just focusing on FTD. There's significantly more focused on Alzheimer's, which makes sense if it's a numbers game. Some of that research may benefit FTD patients, but I wish...anyway, I guess research won't really help us, but I still want others to not have to go through this. And you're so right about it being the dark ages. It feels like a guessing game sometimes. There are a hundred treatments for eczema but for FTD we're using off label drugs for other conditions that have black box warnings!

You're definitely in a tough spot with your husband's showboating. Hopefully his providers will see it for what it is. Keep advocating and engaging. He may not appreciate it but it's the right thing to do. UPenn seems to have a great program (man, you must be out past Harrisburg because that is a long drive!). We're a little further south at Swank/Christiana Care in Delaware. I read an article recently that talked about the mentorship program that UPenn has for caregivers. They pair up newer caregivers with more experienced ones to meet by zoom. Definitely worth checking out.

MaineJames, FTD is a subtype of dementia different from Alzheimer’s, although there are many similarities. From Wikipedia:

Frontotemporal dementia (FTD), or frontotemporal degeneration disease, or frontotemporal neurocognitive disorder, encompasses several types of dementia involving the progressive degeneration of frontal and temporal lobes. FTDs broadly present as behavioral or language disorders with gradual onsets. Common signs and symptoms include significant changes in social and personal behavior, apathy, blunting of emotions, and deficits in both expressive and receptive language.

BTW, at the bottom of the web page is a list of common abbreviations used in this forum.

Well said and thanks for being out there

That the Willis family made his illness public is remarkable. Maybe in the future they will release his progression through FTD.

Getting ready for the unknown while dealing with the unknown is so hard. As I've mentioned, the research is lacking in so many aspects of dementia/FTD. It's lacking because no early diagnosis is possible. No treatment-other than symptom management. As well as every person afflicted is different-yet the same. The cognitive decline is primary across all forms of dementia. I think FTD is harder because it can start earlier and progress a lot faster. It does not respond to medications used to treat Alzheimer's symptons in the same way-if at all. It also seems to have more of a roller coaster decline. Some days/weeks can be very good for the person afflicted, then other days/weeks awful. It doesn't behave the same way to measure decline in function like Alzheimer's or to be staged-which has been a result of research and caregiver's input of changes. At this point, I'm gauging my husband's changes against the every day function of a reasonably healthy person and his past emotional/physical abilities and how this has changed in relation to the formal diagnosis of almost three years ago. Especially important (to me) given that the lifespan of FTD is about 7-12 years. He is not quite mid-point now. Eating less, sleeping 12+ hours a day, initial hallucinations that haven't returned (yet), memory and conversation abilities are reduced, and so on. I think he's trending pretty closely to predicable changes. Staging is not a thing for me, as long as I am aware of standard decline issues with FTD, that's ok. I think his apathy has increased-and will become worse. That will be the next challenge. Otherwise, I try to respect his sleep cycle schedule. All medical appointments are made later in the day. Snacks at 4pm. Dinner at 7pm as it always was. Thank goodness for football, he has always watched it. His team is doing very well, he really enjoys the sport. Which really helps to maintain a sense of normality now. Hope some of this helps.

Happy Caregiver Month to one and all!

@leasdad that has to be awful. My husband's delusions are fairly benign and much less frequent now, mostly focused on "those kids" moving his stuff and confabulations incorporating things he sees on TV into what he thinks is happening in real life (needless to say we no longer watch the news). Have you shared the delusions with her doctor? The combination of anti-psych and anti-anxiety meds he's on seems to have helped my DH tremendously. When he is struggling with delusions or anxiety, I take his hand (bc it calms him and helps him focus), acknowledge his concerns, and then redirect with some "help" I need from him (folding towels, putting the silverware away, sweeping the leaves off the deck, etc.). It works for us, for now.

A friend's husband who has FTD is taking seroquel. It was increased recently and still seems to be helping. He tends towards the agitated form of FTD and repetitive questions, statements.

I think one way of staging this is to think of how someone who is not at all familiar with FTD or dementia would think, say, react to what's going on. For example, when I'd chat on the phone, with another friend whose father had Alzheimer's, I could hear him screaming in the back ground. I'd say "he's really loud, what's going on, why is he shouting like that?" She'd say "oh, that just Pop doing his thing." She knew he had Alzheimer's-was caring for him with her Mom, but was so used to the behavior, it didn't phase her at all. So, for me the metric will be when there are so many issues with my husband-I will know FTD has progressed significantly and take appropiate action.

The rotten thing about making these decisions is nearly all of us are not medically, clinically trained, let alone employed in the medical field, in hospitals and patient care. Of course we struggle with these decisions, dealing with a very complex illness and yet nearly all the doctors and their staff do not really understand just how hard this is for a lay person to do. This has to change, better support, information and direction would be a great start.

Here is a YouTube video i watched recently. It is pretty academic but it does address that there is a strong connection between the areas of the brain that are affected by FTD and Alzheimers. It was also interesting to hear that FTD ends up taking longer to diagnose because it happens more frequently in younger people and they are initially thought to have psychiatric issues. Per Tam Cummings info on staging, FTD has a separate staging tool through stage 5 then at stage 6, it is staged the same as Alzheimers. DH (60 yo - began seeing changes about 3 yrs ago) doesn't have a diagnosis yet, has microvascular changes on a recent MRI done for a very bad ear infection to rule out abscess, behaviors that fit bvFTD changes, is an active alcoholic which does lots of damage to the frontal lobes and refuses any neurology work up. So.... here we are.

I cared for my mother with end stage cancer at my home. She had her own space in the basement. Sometimes I'd hear her chatting, and I knew she didn't have any visitors. It was her invisible friend she was talking to. He sat next to the TV on the sofa, she chatted about food or the weather. If I had to pass through her space to do laundry, always made sure to say "Hi" in his general direction. Which she said he liked. For awhile my husband thought the stuffed animals were talking to him-they now are perched in his bedroom-just to hang out with him. He has had visual disturbances that seem like vapor trails. Doesn't seem to bother him too much. If they come back and he's upset by this, then I'll ask about adjusting or changing medications. Thing is, illness can really play with your brain-no matter what you have-Cancer or Dementia. It's his world now, and as the primary caregiver, I want him to be in a safe, secure, place and content.

Has anyone looked into AVB-101 clinical trials for FTD?

this is about the AVB101 it is being tested in Europe in early stages hoping to start the same testing here soon