Expert: Mary Gordon - 9/27/2006

Question
My dad has been having symptoms of dementia for 6 years.  He is very healthy and he doesn't seem to know there is anything wrong with him.  We have him in his own home with 3 caregivers and he is very happy.  We include him in everything we do as a family and we respond to his questions or conversation as if nothing has changed.  We have always done this because we felt the diagnosis would have been devastating to him. Do you think this is o.k.  He still feeds himself but needs to be bathed and dressed. He was incontinent for about 3 months but is no longer.  We love him dearly and only want him to be happy.-------------------------

Followup To

Question -
what are the chances of my dad dying of some other cause before he reaches end stage alzheimers?

Answer -
Hi Karen, you'll hate my answer.....because it has to be "it depends"...on how old he is, and what other health problems he has on top of the Alzheimer's.

For example, if he's relatively young and very healthy in other ways, he is more likely to survive to the end stages than someone who is frail and has a constellation of other issues.  My mother in law was in her early 70's when she got AD, and other than some arthritis, she was vigorously healthy, and doubtless would have lived to be 90 without Alzheimers. So...there was nothing brewing to take her life other than the AD, which took 6 years to finish her.   

As I'm sure you can appreciate, having Alzheimer's really complicates dealing with every kind of health concerns.  Its very hard to detect many illnesses when the person can't tell you how they feel or answer questions properly.  They may not even seem to feel what you think they should feel - i.e. you see a big sore or bruise and you think they should be moaning in pain, but they seem obvlious. Eearly detection of a lot of serious illnesses becomes next to impossible given that you have to go by behavioral changes (i.e. if they can't tell you something strange is happening, you won't have a clue they aren't okay until its so bad you can SEE the results from the outside or in the way they act). You'd have to be the miracle "psychic detective" to guess there is a problem before that point.

Having Alzheimer's also complicates the treatment of many diseases. The person can't understand the purpose of the treatment, or cooperate with required procedures and therapies. Families often decide it just isn't worth putting the person through scary or painful tests, or procedures, especially if those procedures might impact quality of life. Just for instance, general anesthesia can really impact people with AD, and cause a big mental decline, so families looking at surgery may just decide it isn't worth it - the costs aren't worth the benefits.

These factors of age at diagnosis and general health really influence survival time. They used to think people with AD survived an average of 7-9 years after diagnosis, but more recent studies suggest its more like 4-5 years because of  the tendency for the person to be so vunerable to being killed by other health problems that would be treatable and survivable in a person without dementia.

Having said that, its next to impossible to predict for any one individual. Things can go fast or slow - and they can plateau.

Here is a good article on the subject
http://www.nia.nih.gov/Alzheimers/ResearchInformation/NewsReleases/Archives/PR20

Mary G.

Answer
Hi Karen, you can't second guess decisions you made in the past. If you were going to tell him the diagnosis, the time to do so would have been in the early days. I say that because many people would want to know so they can use what time they have left with their mind relatively intact to look after their affairs, mend fences, take trips, etc.

You know him better than anyone, you made the choice, and it is what its. You did what you thought was in his best interest, and no one can argue with that. You do the best you can with what you know, and you can't look back. . There is absolutely no point now. He is content and happy, and being told won't do anything but upset him.

When my mother in law as in mid Alzheimer's, one of her sisters died - the one she was closest to. Within a short time, she had forgotten her sister was dead. even though she'd been at the hospital, at the visitation and the funeral, out to the cemetery. Every time anyone happened to mention something about Kaye, my mother in law would get very upset because it was like brand new information to her. She would accuse us of lying to her, hiding the death from her,  of excluding her from the funeral etc. She just couldn't remember things.

Imagine telling your dad now he has a terminal illness - he will be upset - but then he'll forget entirely (or worse, stay upset and depressed but not remember WHY he's feeling down).

I'd let him be happy. Serves no purpose now to tell him anything but you love him.

M.