Expert: Paula Damgaard - 4/27/2010

Question
Hi,

My name is Brett. My Mom has had early on-set Alzheimer's for awhile now. She is 50 but has shown symptoms since she was 44. She was diagnosed four years ago. She always has muscle twitches, has forgotten her family, is fully dependent on my father for daily care including feeding and using the restroom. Her eye has gone astray, she cannot walk down stairs, is mostly immobile, leans extremely to the right. My question is what stage would you think she was in and what should her life expectancy be? We believe she is in the 7th stage but are not sure.

Answer
Hi Brett,

I would say you are probably right that she is probably in end stage.  How long she will live no one really knows.  Average for that stage is 18months.  Do you have Hospice involved?  They would be able to help your dad in her care and provide comfort for both of them and you.  Even though no one can say she only has the "six months to live" that is often associated with Hospice, most Hospices' will take on patients with dementia because they know it is a progressive disease and they will not get better.  

I would also strongly suggest if you haven't thought about it to make sure your mom has at least a brain autopsy when she does pass.  This information may be extremely important to you later on in your life.  IF the researchers come up with some link and they are looking for first degree relatives with documented disease, you wouldn't be able to participate unless you have that autopsy.  It might easily be the best present your mom could ever give you.  It is a hard topic to discuss but I really believe it is one of the most important.  

I am sorry you are having to go through this with your mom at such a young age.  This is a very hard  disease.  Please let me know if you have anymore questions!  Take care of yourself and your dad.  Paula