Welcome! Usenet is a wonderful resource containing hundreds of newsgroups with
both informative and some less so postings.

I also have AD albeit only 52 years old (and creeping up to 53 next month). I've
been on Aricept and, now, Reminyl. I have no real knowledge that I have improved
on either of them. On the other hand, it might have made a big difference if I
hadn't. I'm coming up for another one of those tests which will determine
whether or not my subsidised prescription will continue.

I just realised that I'm not particularly concerned about whether I'm improving
or not. It also occurs to me that that's because the burdon is on the caregiver
rather than the sufferer. Unless there was to be a cure in 2 years time, which
is unlikely, I'd prefer to not be an unnecessary burdon for my caregiver.

--
2 + 2 = 5 for sufficiently large values of 2.

That was our experience with my father (twice). Immediate decline first
time, he got back maybe 50% of what he lost when he was put back on it.
Second time, not so much of a decline but stilla noticeable one that made
him worse, because he was switched to a different drug (memantine). The
advice now is usually/often to use both drugs together.

Not in my fathers case, but at that point it would have been pointless as he
would have forgotten within a hours anyway. He knew he had a memory problem
but not specifically what it was.

If your mother cant recall things for more than a few hours, IMHO no point
telling her.

I can't speak to the stopping of medication, but suspect that the doctor is
right in that stopping might precipitate a rapid decline. And, any memory loss
or loss of function cannot be regained if it is due to ALZ.

My mom, 78 years old, was diagnosed about 2 years ago. We suspected something
for about 2 years prior, but chalked it up to aging and the fact that Mom always
had some odd ideas anyway. She does not know or does not acknowledge that she
has ALZ. In fact when it was discussed in the early days of her diagnosis, the
mere mention of ALZ would set her to crying and depression, followed by anger.
It's hard to say of that was because she "knew" that she had it or if she was
reacting to her belief that ALZ was a brain disease that meant that she going
crazy. We've since decided that there is no reason to tell her.
-steve

Galena <Galena_bc1@yahoo.com> is alleged to have said:

We read you loud and clear.

No, everything bad that's happened to Mom in the last couple of years
is my fault, don't you know?  Just ask her...

She's far enough along that I wouldn't try to explain the Alzheimer's
now.  It would just upset her and then she'd forget.  So when she asks
me what's wrong with her, I say something like "you got old," which she
still understands and will even say herself (she's 86).

When my MIL was on it, my FIL asked about stopping it, as it was very
expensive and she "wasn't getting better" from taking.  They did taper
it off, and the decline was immediate and drastic.  It isn't so much
that it helps the afflicted person get "better" as that it slows the
progression of the disease.  Think free-fall when skydiving, versus
being under a canopy.

My MIL was told and "knew", but she didn't understand what it meant by
the time she was diagnosed, because of other problems.  Now, she can't
understand anything she is told, other than "Open your mouth" and "Swallow".

My grandfather was told & understood, but it wasn't to long before he
lost the ability to make the necessary connections.

Beth

My mom's been on Aricept 10 mg for a year now, even though her diagnosis is
vascular dementia eather than Alz. (She may have Alz on top, many VasD
sufferers do, but they tend to stick with the dx they can see on the PT
scan.) She has declined somewhat, but I fear what she would have done
without it.

Before we told Mom (and she has been in on every discussion), she was the
first to say "My thinker doesn't always work too well." She feared Alz,
because she used to work at a facility which had some very advanced cases,
and in her mind, that IS Alz. She was very relieved to have another
diagnosis. She sometimes gets antsy about it, but I remind her that parts of
her brain are damaged, and if parts of her arm were damaged due to a fall,
she would feel no embarassment about needing or accepting help. But she has
trouble remembering exactly WHAT is wrong. She just tells people her memory
doesn't work right.

You certainly did. Welcome to the club no one wants to join. You will find
support, advice, inspiration and even a few giggles here.

Songbird

Galena,

You might have a look at http://www.rxlist.com/cgi/generic/donepezil_cp.htm

As I understand it, Aricept has no effect at all on the progression of the
disease.  The damage to the brain continues at exactly the same pace,
whether the patient takes Aricept or not.  Removing Aricept does not
cause the patient to suddenly degenerate.  The disease still continues
the same pace of progression.

What Aricept does is suppress the effect of an enzyme that acts in the
brain to reduce the availability of acetylcholine, another chemical that
appears to participate in the transmission of signals from one neuron
to another.  In effect, Aricept is improving the patient's ability to cope
with ALZ.  It reduces some of the mental symptoms without in any way
reducing the actual damage to the brain.

The above cited article suggests that the effect of Aricept declines
as the disease progresses.  One possible reason for this is that the
diseased brain produces less and less acetylcholine.  When there's
not enough acetylcholine being produced, inhibiting the suppressor
enzyme does less and less good.  Even with Aricept there won't be
enough acetylcholine in the brain.

I don't know what to say about your dilemna.  My suspicion is that
your Mom has reached the stage where Aricept is not doing any
good and withdrawing it won't do any harm.  Whether or not that's
true, you can be pretty certain that withdrawing Aricept will NOT cause
her brain to degenerate faster.  The worst it can do is make the
symptoms appear a bit worse.  Even if it does make the symptoms
appear worse, I suspect that the difference in symptoms you would
see now between on and off Aricept will be significantly smaller than
the difference you saw when she first started the drug.

Speaking from my own observations, both my father and my mother-
in-law have taken Aricept.  I was not able to tell any difference in either
one of them and neither could any of our other family members.  It
appears to be a hit or miss thing.  We couldn't tell any difference when
they want on the drug, or when they went off.

It appears that some people benefit and some don't.

As an aside, I personally am very offended by the drug company ads
on TV that show a genial actor saying that he couldn't remember the
names of his own grandchildren and implying that with Aricept he could.
As far as I know, that's pure BS.  AFAIK the studies done with Aricept
only showed that it slows the decline of cognitive function on certain
tests, not that it reverses them.  If he (or the person he portrays) couldn't
remember his grandchildren's names before, it isn't clear that, even
with a good response to Aricept, he'd remember them afterwards.

I'm glad the drug companies are working on acetylcholinesterase
inhibitors - ineffective as they are.  But I can't help feeling that they're
badly oversold and overhyped as a way to drain money out of
family members who are desparately concerned about the deline of
their parents.

Further, since Aricept has been such a huge money maker, the other
drug companies seem to have poured a lot of research funds into
more ACH inhibitors that we don't need - we've already got Aricept -
instead of putting the money into research for a cure.

   Alan

although it

worse. The

Galena,

You might have a look at http://www.rxlist.com/cgi/generic/donepezil_cp.htm

As I understand it, Aricept has no effect at all on the progression
of the disease.  The damage to the brain continues at exactly the
same pace, whether the patient takes Aricept or not.  Removing
Aricept does not cause the patient to suddenly degenerate.  The
disease still continues the same pace of progression.

What Aricept does is suppress the effect of an enzyme that acts in
the brain to reduce the availability of acetylcholine, another
chemical that appears to participate in the transmission of signals
from one neuron to another.  In effect, Aricept is improving
the patient's ability to cope with ALZ.  It reduces some of the
mental symptoms without in any way reducing the actual damage
to the brain.

The above cited article suggests that the effect of Aricept declines
as the disease progresses.  One possible reason for this is that the
diseased brain produces less and less acetylcholine.  When there's
not enough acetylcholine being produced, inhibiting the suppressor
enzyme does less and less good.  Even with Aricept there won't be
enough acetylcholine in the brain.

I don't know what to say about your dilemma.  My suspicion is that
your Mom has reached the stage where Aricept is not doing any
good and withdrawing it won't do any harm.  Whether or not that's
true, you can be pretty certain that withdrawing Aricept will NOT cause
her brain to degenerate faster.  The worst it can do is make the
symptoms appear a bit worse.  Even if it does make the symptoms
appear worse, I suspect that the difference in symptoms you would
see now between on and off Aricept will be significantly smaller than
the difference you saw when she first started the drug.

Speaking from my own observations, both my father and my mother-
in-law have taken Aricept.  I was not able to tell any difference
in either one of them and neither could any of our other family
members.  It appears to be a hit or miss thing.  We couldn't tell
any difference when they want on the drug, or when they went off.

It appears that some people benefit and some don't.

As an aside, I personally am very offended by the drug company
ads on TV that show a genial actor saying that he couldn't remember
the names of his own grandchildren and implying that with Aricept
he could.  As far as I know, that's pure BS.  AFAIK the studies
done with Aricept only showed that it slows the decline of
cognitive function on certain tests, not that it reverses them.  If
he (or the person he portrays) couldn't remember his grandchildren's
names before, it isn't clear that, even with a good response to
Aricept, he'd remember them afterwards.

I'm glad the drug companies are working on acetylcholinesterase
inhibitors - ineffective as they are.  But I can't help feeling
that they're badly oversold and over hyped as a way to drain money
out of family members who are desperately concerned about the decline
of their parents.

Further, since Aricept has been such a huge money maker, the other
drug companies seem to have poured a lot of research funds into
more ACH inhibitors that we don't need - we've already got Aricept -
instead of putting the money into research for a cure.

    Alan

My mother who has had dementia for just short of 12 years starting taking
Aricept as soon as it came out.   At first I thought it might have helped
her but she hasn't taken it on a regular basis for years and she has
declined very slowly.     The first few months of her dementia she knew she
had a problem but in less than a year she didn't have a clue about her
illness.  My brother who is her regular caregiver says it doesn't seem to
make a difference and makes her sick to her stomach.   I tend to agree with
him.  If I were to make a judgment on it's effectiveness, I would say it
might work on some people but not for others.  The best you can hope for is
that it works for awhile.   Just my opinion......June

Not a group anyone really wants to join....

Have you talked to her doctor about combining the Aricept with another
drug - particularly, with Namenda?  That particular combination seemed
to slow things down again for the Dowager (my own mother).

Blessed be,
Baird

Welcome Galena!

My MIL has been on Aricept for about 5 years and IMO, it slowed the decline
noticeably.  It can't reverse it, so slowing the progression of the disease
is the best to be hoped for at this time.  We were initially told the drug
had a window of 16 months of peak benefit and then the benefits tapered off
so after a couple of years we asked if it were still necessary.  At that
time, the doc told us they had since found that getting off of Aricept
tended to allow a quicker progression of the disease (sudden increase in
problems with bladder & bowel incontinence, decrease in verbal abilities and
motor skills, increased problems with dementia).  I asked the caregivers at
my MIL's facility and they told me they had observed the same.

You might want to check with Pfizer and see if they offer a program for
reduced drug prices in your area.  I don't know about the programs available
in BC, but here in the states, they used to have a program for the elderly
with limited resources to get the drug at a reduced price.

Karen

HOLY SMOKES!

This was a fantastic response to my questions.  I am super inpressed with
your support.  Thank you so very, very much.
It seems there are many opinions on Aricept.  The one thing I think I gained
from all your messages is that I am terrified of taking my Mom off Aricept
now.  If there is even a tiny chance that she will have a sudden decline,
then she takes Aricept until she is in the final stages. (Oh yeah, the Dr.
will not say she has Alzheimers - just dementia - what's with that?)

It seems that the drug company (pfizer, is it?) has us over a barrel.  Start
taking this drug that seems to slow the disease, and you have to take it to
the bitter end.

My next question is a tough one:  My Mom lives in an isolated spot and is on
her own still.  She is still driving and I am worried sick that she might be
a hazard out on the highway.  When will I know when it is time to convince
her she should not drive anymore.  Believe me that is going to be an
unbelievable battle.

I am reading the 36 Hour Day, but not too far into it yet.

Again, thank you all for your advice and information.  It is great to know
you are all here.

Galena