PEG Feeding System for Father with Dementia

I have a 83 yr old father who has moderate to severe dementia. He knows his name and children’s name but does not know dates and can become confused easily. In addition, he also has PLS (primary lateral scrolsis, a derivative of ALS). He has lost the ability to swallow well approx. 4 yrs ago. At that time he chose not to have a PEG system inserted and we did slow personal feedings. Recently he got the flu and aspirated, He is now on life support with pneumonia and mrsa blood infection. He is currently being feed via tube inserted down his throat to his stomach.

My question is quality of life with feeding tube in dementia patients. He will need to be going to a nursing home if he survives this. With his dementia I do not believe that he will leave in the feeding tube nor sit for the long periods of time required to feed. Reading and searching on internet, I have not found much success with feeding tubes in dementia patients.

I am looking for comments from people who have experience with peg systems and caring for a dementia patient. Your comments would be appreciated.


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submitted by on Thursday, 01/13/2011 - 2:39am

Why did your father, at age 79, decline to have a PEG feeding system? Was this consistent with long held beliefs, or the result of confusion and declining cognitive abilities? I think your father's wishes, if you can remember/determine what they were when he was still "himself" should be taken into consideration. That is my opinion. Others might feel that you need to do what you consider to be in his best interests regardless of what he might have chosen.My 84-year-old husband has made it clear on numerous occasions, all when he was lucid, that he does not want a feeding tube. He considers that an artificial way to prolong life (his belief) and since Lewy Body Dementia has no cure and certain progressive decline he does not want his life artificially prolonged. After a hospitalization about a year or so into the disease he was quite weak and a feeding tube was suggested. He refused and I supported that decision (because I knew it to be consistent with his long-held beliefs). As he recovered his strength his ability to swallow did return, although he still has problems.I am not certain that I would make the same decisions for myself, but I am trying to be fully respectful of my husband's beliefs and outlook on life.As starlight suggested, the NH he will be released to should be able to answer some of your technical questions. Only you and your father can answer questions about quality of life vs length of life.This is not an easy topic! I wish you strength and courage as you deal with it. And know that whatever you decide will be the "right" answer.Please come back and share what you find out, and how things are working for you and your father.

submitted by on Tuesday, 01/04/2011 - 2:33pm

Rebecca,  I don't have experience with peg systems, but wanted to respond anyhow. We have gone through some similar experiences with my dad - he aspirated and developed pneumonia last year, so we put him on hospice because of his advanced stage of Alzheimer's but the pneumonia resolved. I wonder if a health care professional at a prospective nursing home might be able to answer some of your questions. I can see why you are asking questions about quality of life. Best wishes with finding some answers.

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