My mom with frontal temporal dementia has started to show late stage signs. How long does she have left?

My 53 year old daughter has been diagnosed with frontal temporal dementia. Doctor has ordered a PET scan to verify shrinkage in the brain. However, Medicaid has denied it due to unnecessary medical needs. I would any suggestions from this forum as to how to get a PET scan and pay for it in the Harrisburg York Pa area. Thank you. Maggie

It's different for everyone, but my dad was just transitioned to hospice care, which typically means they expect the person to live 6 months or less. He has been in a wheel chair for a few years, so that wasn't the trigger. For him it was choking on his own saliva, inability to feed himself, constant sleeping, not wanting to eat and he sometimes doesn't talk or respond. I understand that it's really hard to determine the life expectancy of dementia patients, and we're really not sure how long he has left.

Thank you I will have to talk to the doctor and see what they think from this point on as of right now are plans is just hoping for the best she is in the best memory care unit that we can afford and I am pursuing college about half way through with it if everything goes right

J, have you put your life on hold or are you pursuing college and/or career? You are in a very tough spot for one so young!

From what I've read, folks with FTD have extremely variable life spans. While the average life expectancy after diagnosis is about 7 years, some patients die after 18 months, while others survive for 20 years with this form of dementia.

Let us know what the doctor tells you, and what your plans are.

Thank you I will have to try and get in contact with her new doctor and see what they think luckily she still eats, and will wonder around some. Thank you for your help Im just trying to figure out everything being a 20 year old and trying to help take care of my 57 year old mom

Follow up with that doctor. They have her medical records and can give you more informed answers than we could.

She is already in a 24/7 memory care unit since the doctors have advised against having her on her own. We just moved her into a new place so the doctor there has been updated on what is going on and as of right now I have not heard back from the doctor about what they think.

Have you discussed this with the doctor who is following her dementia?

Have you considered having her evaluated by hospice care?

No one can predict with certainty, but professionals with lots of experience may have some ballpark figures for you.

I am so sorry that your mother is facing this so young.