Expert: Paula Damgaard - 8/23/2006

Question

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Paula,
Does AD always progress?  Do all AD patients get worse or can it ever be stabalized with AD meds?
My mom has had a difficult life(bad marriage,divorce,almost killed in an accident in which she was hit by a drunk driver and her close friend died in the accident).  It breaks my heart to see her going through this and I can not imagine her in an assisted living home. She is VERY independent and refuses  help. I just hope and pray this does not get any worse!  Could this be anything else other that AD?  How do we really know if the only true diagnosis is an autopsy?

Thanks and God bless,
Linda



Followup To

Question -
Hi Paula,
My mother is 74 and her doctor suspects AD.  She had a CT scan of the brain and there was definite loss of brain tissue.  She is taking Aricept and seems to be doing fair.  She lives alone and is very independent and refuses help with her housework etc. (she does it herself and is doing a good job). I live two hours away and call her every Sat....she converses with me fine except that she confuses the time of day.  For example, I called her at 6:30pm and she thought it was sometime after breakfast. My parents are divorced but my dad checks on her and he told me recently that she was making him a sandwich and forgot how to prepare the sandwich.  He also said she has locked herself out of the house and she called him once and told him she was locked in the house and could not get out.  Otherwise she keeps herself and her house clean and goes to her doctor appointments.  Should I correct her when she is confused or will that just make her feel worse? Does this sound like AD or dementia?  What can I expect the future to hold for my mom?  Does it always progress or could it stay the same?  What can I do to help her?
This is alot of questions and I really would appreciate your input.
God Bless!
Linda

Answer -
Linda, With this illness, there are never too many questions!  First let me tell you that there is no difference between having AD and dementia.  It is the same.  Second, you must not be fooled by the tone of your mother's conversations when you call her.  AD patients are very good at convincing people how "well" they are doing when they are called on the phone.  They don't know that they "forget" so nothing ever seems out of sorts to them!  The fact that she has forgotten how to make a sandwich and she has locked herself in the house sends up all kinds of red flags to me.  If she is forgetting how to make a sandwich how do you know that she isn't forgetting to shut off the stove?  Cause you asked her?  She wouldn't know if she forgot or not!  

Should you correct her? No.  Why?  it will only make her feel bad.  Will it progress, yes.  You need to make plans for what you are going to do, she will need to be in an assisted living situation, probably sooner than you imagine.  Contact your local AD Association, find out what services are available.  Ask them what is available where your mom lives.  You and your dad should have a sit down and come up with a plan as to how you are going to convince her that she is going to have to move.  She is going to need full time help before this is over.  Where do you want her to be then?  It is really hard to do long distance caregiving.  

I hope this helps.  If you think of more please feel free to ask.  Good luck.  Paula

Answer
Hi Linda, unfortunately it does progress.  While you are right we can't be 100% sure it is AD without autopsy (which you should definitely do when she dies, so that if research becomes available for children of AD confirmed patients, you can be in line behind me to get the help!) to find out for sure.  

The meds she is on will keep her where she is for a short while, but then she will progress, slower than if she wasn't on drugs, but still progress.  

When we diagnose someone we do a full battery of neuropsych tests (paper and pencil, memory tests) that take about 4 hours to do.  The the neurologist sees them and takes into account what those tests showed with the results of the other tests (CT/MRI, bloodwork, history) and come up with a diagnosis.  When comparing our diagnoses with autopsy we are about 90-95% right everytime.  

There are many research centers that your mom could go to that could offer her help that isn't available to the general public if she wishes. The local AD Assoc can tell you what is happening in your area.  

Hope this helps.  Sorry I can't make her better.  Paula