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[quote=Anonymous]My brother was diagnosed with FTD in his 40s. It is very different from AD, and FTD at that age is not considered early onset, it typically is diagnosed between 40-65yrs.

He lost his ability to communicate due to aphasia. His behavior became bizarre and unregulated. He is now in diapers and unable to care for himself at all. He has seizures. He sleep a lot, but maybe that is due in part to the meds, which are mainly to control his mood. So far my SIL has been able to keep him at home but the doctor said it won’t be for much longer that she can do that. She has daily help and special equipment in her home.

The prognosis and lifespan for FTD are different than they are for AD. Your mom may expect a pattern more like AD, many doctors aren’t very good about communicating what FTD is like and patients only hear the word “dementia.” You can make sure she has a full
understanding of what to expect, connect her up with national and any local groups, help her scout out care at home, check into insurance to see what they will cover, see if there are any free dementia day care services to help with costs. My brother was by far the youngest in the dementia day care but the people who ran it were good and he believed he was there to help out which made him look forward to it. That’s when he was still at least a little verbal though.

I am sorry OP, it is a brutal disease, progresses more quickly and leads to death more quickly than AD.

I hope you can help her get involved in support groups and help her find services so she isn’t scrambling once things get bad. It is a tough road to be on.[/quote]

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