Expert: Paula Damgaard - 4/14/2005

Question
Paula,

My mother (66) has suffered from Rheumatoid Arthritis for years.  About a year ago, she began to significantly slow down and we attributed it to the RA.  However, in very rapid succession, she began to have difficulty remembering events, started to get confused regarding dates/times for appointments, etc., began to loose all sense of time (what time she woke up, what time to go to bed), lost any sense of hunger (but will eat whatever we place in front of her), can no longer express her thoughts coherently, has become incontinent, and has begun to have hallucinations (ex. she thinks she went outside last night, took off all her clothes, and tood a swim in the ocean.  She does nothing all day other than watch tv, or wander around the house, 'touching' things.  She can no longer use the stove/phone/etc (needless to say, she no longer drives).  She changes her clothes frequently and generally has put her pajamas back on by noon or 1:00 so that she is ready for bed.  

We took her to be evaluated by Dr. Barry Reisberg in NYC and he prescribed a number of blood/urine tests, in addition to putting her through a series of congnitive tests (she did not know the date, president, where she went to school, what she did for a living, could not subtract 2 from 20, etc.)  A previous doctor prescribed a CAT Scan/MRI/EEG/Pet Scan, etc.  None of the non cognitive tests showed any irregularities.  As a result, Dr. Reisberg diagnosed her with moderate Alzheimer's (stage 5).  When we asked him about the rapid onset of the disease, he explained that the symptoms might have become apparent in the past year, but that the disease was likely present for many years, though undetected by us (and likely covered up or compensated for by my father).

I am concerned about four things - (1) My father (68) is almost equally infirm, due to Parkinson's Disease.  In your experience, are there other environmental factors that could account for the severe neurological problems of my very young parents?

(2)Will the disease continue to progress at this pace or do you think it might slow down in the future?  She is taking Aricept and another AZ drug with no affect.

(3) What is the liklihood that Alzheimer's is an inherited disease (my mother's mother recently passed away from AZ at 91, having suffered from it for 8 years)?

(4) Have you heard of any connection between Rheumatoid Arthritis and AZ?

Thank you in advance for your time and consideration!

Answer
Hi Catherine,  wow, you sure have your hands full.  To answer your questions, #1 there are no known environmental factors that would account for the early onset of the problems that your parents are experiencing.  Of course that doesn't mean that there aren't any, just none known at this time.  The best gift you can give yourself and the rest of your family is to make sure that both of your parents have at least brain autopsies when they die.  Without this being done, you will NEVER know for sure what they have.  This will also help (#3) answer the question as to whether or not it is hereditary.  We don't know for absolute sure if it is or not. People who develop the disease early, 40s -50 yrs of age, they have found some genetic links.  Having the diagnosis by autopsy allows all of you to be first in line should they come up with a cure or medication that can only be given to people who know for absolute sure that they have a family member with the disease.  Autopsy will give you that documentation.  DO NOT let them go to rest without having that done!!!!  I can't stress that enough.  It is a simple procedure and you can still have an open casket, viewing etc.

As for #2 whether or not is will slow down, I am afraid no one can answer that for you.  Sometimes they plateau out and you have an evening out of the disease sometimes not.  Unfortunately, the earlier the onset the quicker they seem to decline and die.  Sorry.

#4, I am not sure. Could be that she was already predisposed to having the disease (since her mother did), and all of the medications which she has taken over the years may have broken down her defenses sooner, causing the disease to present itself earlier.

Again I am sorry, I wish I could give you some better hope.  My advice is to enjoy them as much as you possibly can now.  Then allow them to die without any heroic measures.  This disease is no fun and keeping them alive for longer time just seems cruel.  Good luck, let me know if I can help any other way.  I will keep you in my thoughts.  Paula