My experience with Alzheimer's is that the impacts of the disease for
many people are slow and subtle in the earlier stages. However, drugs
or no drugs, there seems to be a point in the progression where the
illness appears to build up a head of steam - where the losses are much
more obvious and devastating, and the illness seems to move faster.

Given all the excess capacity we supposedly have in our brains, my
theory has always been that the disease is chewing through our backup
in the earlier stages, so you don't SEE big changes in behaviour or
ability - just slow erosions.  However, once you've run out of the
alternate routes for various brain functions, and the disease is into
the really crucial bits with no back up left...you start to see major
losses in abilities or changes in behaviour over shorter time frames.
Just to give you an example, my mother in law lost speech in the later
stages over a two week period. Before that, a bit garbled, but she did
make sense. After that...nothing but garble, and no, she wasn't on
drugs, didn't have a stroke, had no other illness. Just the final
winking out of the connections that made intelligable speech possible.

For your dad, it could well be the drugs, so you will want to try
something else (if it is the drugs, you will know soon enough if you
wean to something else or come off them slowly). However, it could also
be that your dad is at the point where fairly major damage has occurred
and he will continue to go downhill, whether he is on meds or not.

Below my signature I've pasted the stages just for your reference so
you can see where he may be in the illness. I'd strongly urge you to
find a doctor you trust and who you can work with, since as this gets
worse, you will need help and your current strategy of standing alone
with this may not be the best (you sound like you very much mistrust
the doctor and his advice). You need someone you can talk to about what
you see, and trust, so you can try out various ideas. You have to be
prepared that not everything will work for your dad, and that one
failure (i.e. one drug that isn't right for him) shouldn't mean you
throw in the towel on all drugs.

Mary G.

Stages of Alzheimers

In 1982 Dr. Barry Reisberg published what was to become the best and
most widely accepted description of the stages of Alzheimer's disease.
Even today, years later, when experts referto a person being in stage 5
or stage 6, they are referring to Dr. Reisberg's scale of seven stages.

Adapted from Reisberg, B., Ferris, S.H., Leon, J.J. & Crook, T. The
global deterioration scale for the assessment of primary degenerative
dementia. American Journal of Psychiatry, 1982

Level 1

No cognitive decline - (or Normal Adult). No subjective complaints of
memory deficit. No memory deficit evident on clinical interviews.

Level 2
Very mild cognitive decline (forgetfulness or normal older adult).
Subjective complaints of memory deficit, most frequently in the
following area:
(a) forgetting where one has placed familiar objects;
(b) forgetting names on formerly knew well. No objective evidence of
memory deficit on clinical interview. No objective deficits in
employment or social situations. Appropriate concern regarding
symptoms.

Level 3
Mild cognitive decline (early confusional or Early AD). Earliest
clear-cut deficits. Manifestations in more than one of the following
areas:
(a) patient may have gotten lost when traveling to an unfamiliar
location;
(b) co-workers become aware of patient's relatively low performance;
(c) word and name finding deficit becomes evident to intimates;
(d) patient may read a passage of a book and retain relatively little
material;
(e) patient may demonstrate decreased facility in remembering names
upon introduction to new people;
(f) patient may have lost or misplaced an object of value;
(g) concentration deficit may be evident on clinical testing. Objective
evidence of memory deficit obtained only
with an intensive interview. Denial begins to become manifest in
patient. Mild to moderate anxiety accompanies symptoms.Deficits noticed
in demanding employment situations.

Level 4
Moderate cognitive decline (Late Confusional or Mild AD). Clear-cut
deficit on careful clinical interview. Deficit manifest in following
areas:
(a) decreased knowledge of current and recent events; (b) may exhibit
some deficit in memory of one's personal history;
(c) concentration deficit elicited on serial subtractions; (d)
decreased ability to travel, handle finances, etc.

Frequently no deficit in the following areas:
(a) orientation to time and person;
(b) recognition of familiar persons and faces;
(c) ability to travel to familiar locations.

Inability to perform complex tasks. Denial is dominant defense
mechanism. Flattening of affect and withdrawl from challenging
situations occur.

Level 5
Moderately severe cognitive decline (Early Dementia or moderate AD).
Patient can no longer survive without some assistance. Patient is
unable during interview to recall a major relevant aspect of their
current lives, e.g., an address or telephone number of many years, the
names of close family members (such as grandchildren), the name of the
high school or college from which they graduated. Frequently some
disorientation to time (date, day of week, season, etc.) or to place.
An educated person may have difficulty counting back from 40 by 4s or
from 20 by 2s. Persons at this stage retain knowledge of many major
facts regarding themselves and others. They invariably know their own
names and generally know their spouse's and children's names. They
require no assistance with toileting and eating, but may have some
difficulty choosing the proper clothing to wear.

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May
occasionally forget the name of the spouse upon whom they are entirely
dependent for survival. Will be largely unaware of all recent events
and experiences in their lives. Retain some knowledge of their past
lives but this is very sketchy. Generally unaware of their
surroundings, the year, the season, etc. May have difficulty counting
from 10, both backward and sometimes forward. Will require some
assistance with activities of daily living, e.g., may become
incontinent, will require travel assistance but occasionally will
display ability to orient in familiar locations. Diurnal rhythm
frequently disturbed. Almost always recall their own name. Frequently
continue to be able to distinguish familiar from unfamiliar persons in
their environment. Personality and emotional changes occur. These are
quite variable and include
(a) delusional behavior, e.g., paatients may accuse their spouse of
being an impostor, may talk to imaginary figures in the environment, or
to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may
continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent
violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual
cannot carry a thought long enough to determine a purposeful course of
action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal
abilities are lost. Frequently there is no speech at all - only
grunting. Incontinent of urine, requires assistance toileting and
feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting
and head control.
The brain appears to no longer be able to tell the body what to do.
Generalized and cortical neurologic signs and symptoms are frequently
present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost

maybe the galantamine isnt working for him,  many here have LO's that use
Aricept or Memantine (aka Namenda) or both.

I am somewhat alarmed that you feel able to randomly alter the prescription,
how are you going to know if these things work if you make up your own
diagnosis and medical treatment as you go along??

FWIW (and for the benefit of other posters rather than a criticism of you)
waiting to put him on an Az drug for several years was the worst course of
action you could ahve taken, the earlier you take these drugs the more
noticeable the effect and the longer respite you'll get. It may be he is too
far gone for the drugs to have any effect on the Az now, certainly once you
lose large chunks of capability you will only get some of it back however
good the drugs.

The other symptoms you describe are typical of Az, and the detrioration that
occurs as time gos by,  and therefore likely have nothing at all to do with
the anti-depressants, but its common here for people to report they try a
range of them before they get one that works. And over time, as their
condition deteriorates, what works will change.

Hi,

I just wanted to mention that both Mary Gordon and Tumbleweed have given you
excellent advice.

Waiting to start the drugs was definitely not a good course of action, since
all I have read and heard indicates that early medication keeps the person's
level of functioning from deteriorating so quickly.

Also the Galantamine/Namenda is usually used in conjunction with Aricept as
far as I know.   With my mother in law, there is a dramatic, noticeable loss
of function if she doesn't have her Aricept every day.   If I were you, I
would definitely look into it.

I would also like to verify what Mary said about sudden changes in function
being part of the illness.   It was our observation also, where certain
changes seemed to happen within a short period of time.

My Mom has been on Reminyl (galantamine) for a couple years, seems to
help.  Recently we added Namenda, which seems to help more.  She tried
Celexa and went off it immediately because it really caused a very
noticeable increase in confusion.

Aricept seems to be the most common first drug tried, or Reminyl which
my Mom was given first .. she has never tried Aricept.  Namenda is a
different type  drug that can be given alone but seems better in
conjunction with either Aricept or Reminyl.  It is said to be for mid
to late stage Alz' but most want it earlier if possible.

Of the different types of dementia, Alzheimer's is most common, but
they are now finding other similiar types such as "Lewis Body
Dementia".  One striking symptom my mom had was imagining silent
people in the house.  Anyway, it seems people with this form of
dementia can have a very adverse reaction to anti psychotic drugs.
Celexa is not an anti psychotic (AFAIK) but my mom had a bad reaction
to it as well as an anti psychotic and another anti depressant (each
tried independently, months apart)
http://www.alzwisc.org/lewybody.html

It seems important to ease into these drugs and give them a month or
so to be able to evaluate.  Reminyl is galantamine, but I bought some
galantamine from a health food store.  It was 1/4 the price, but
didn't seem as effective.  Apparently it is not as refined as the
Reminyl and may include other "junk".  I like the idea that
galantamine comes from a tulip root.  :)

A healthy diet and some excercise and mental activity can easily be
overlooked as well.  A little fish oil seems promising too.

Good luck,
Bill

some definitions from drugstore.com ...

Namenda is a NMDA-receptor antagonist used to treat moderate to severe
Alzheimer's-type dementia. Namenda blocks excess activity of a
substance in the brain called glutamate. Blocking glutamate may reduce
the symptoms associated with Alzheimer's disease. Namenda is not a
cure for Alzheimer's disease. Namenda may be used to treat other
conditions as determined by your doctor.

Reminyl is a reversible acetylcholinesterase inhibitor used to treat
loss of memory and thinking ability associated with Alzheimer's
disease

Aricept is a reversible acetylcholinesterase inhibitor used to treat
loss of memory and thinking ability associated with Alzheimer's
disease.

Celexa is a selective serotonin reuptake inhibitor used to treat
depression. Celexa may also be used to treat other conditions as
determined by your doctor.