FTD Group

GG06

Hello All,

I'm not sure "grateful" is the appropriate word, but I am comforted to see more and more FTD caregivers on the forum. I noticed there is a group option and wondered if there is interest in forming an FTD Caregiver group. Let me know if you are.

Kelly

Jeanne C.

I'm not sure what functionality groups have but I would be on board if people are interested.

GG06

I think the groups are just more focused. Because FTD differs from other dementias in the earlier and middle stages, I would be interested in connecting with others that are experiencing similar situations, behaviors, etc. Jeanne, as you know there is a FTD Facebook group, but I don't find it the format or content as helpful as this support forum. As you pointed out, it's not as educational.

storycrafter

I'd be interested too.

When the website was newly redesigned I tried starting a Group for those dealing with earlier stages of dementia. Someone on the forum, before it was redone, had once mentioned a wish/need to chat about loved ones still in relatively early phases. (I could strongly relate because my spouse doesn't need any hands-on care, but his personality and behavior changes have somehow turned our lives upside down. I find myself not wanting to write much because my problems seem insignificant compared to what so many others deal with.)

I initially thought the chance to create a group was a great option on this new format. There were a few nice responses from new people in the beginning, but they were sparse and infrequent and soon stopped. I realized perhaps another group just detracted from the shared experiences on the main forums.(?)

After several months, in a moment of depressed discouragement, I'm sorry I eventually deleted the few threads that I attempted to start. Maybe there's a better way to work with the format of the site?

FTD in general is perhaps a broader topic that could work. Someone else might know a good way to start a group. It might take a little time, but could be worth a try to see if it would fit participants' needs.

Thanks for the idea. I'm game to try what anyone attempts. (There is already an earlier thread titled, "Calling All FTD Caregivers!"

michiganpat

I would be interested in an FTD care group, especially regarding those in earlier stages. Storycrafter, my husband is also in the earlier stages and the personality and behavior changes are also very difficult for me. His memory is mostly intact and he is self care but the constant obsessions and constant talking are hard to deal with. Count me in.

GG06

Storycrafter and Michiganpat, your responses are exactly the reasons I'd like to have a more tailored group for FTD. The "Calling all FTD Caregivers" discussion CStrope started is a wonderful thread and gave me the idea. I think the problem will be having to read through all of the responses if someone is searching for a specific problem. JeanneC and I are getting together for lunch today. We can brainstorm about ways to try to make the group helpful for all of us FTD caregivers. Please chime in with your suggestions too!