my sister is 55 and has been diagnosed with eod about a year ago , although she has had it for at least four or five years before that -- I would guess she is at stage 4 - should we be thinking about long term care? Any idea on the progession of this disease?

Hi cgk, my name is Tracy and I have frontal lobe dementia. Is your sister still active, does she take care of her own daily activities? Each person progresses differently with the disease just as different medications affect us differently. If she is able, I would encourage her to come here and chat with us. By the way, it is great to meet you!

Hi CGK,
My sister who is 51 also has EOAD. Her doctor thinks that she's probably had it for 4-6 years based on her brain scans. It's up and down with her. Sometimes she's able to carry on a conversation with me and other times it becomes very difficult for her to find the words.

She's been told she has it and even discussed it once with me, but for the most part she's in denial.

I know that my brother-in-law has looked into long term care, but she's not there yet. I think that he'll get someone to come into their home to care for her during the day first.
Tracy is right about the progression. Everyone seems to be different. In fact, my sister's doctor is surprised at how well she functions because her brain shows a lot of deteriation. She is taking medication (I'm not sure what) and that seems to have helped some.

It's a tough road and I'm grateful for the support in this forum. Take care.