This is a tough question, but there has been some recent research that
suggests survival time is actually quite a bit shorter than the old
estimates.

A study was published in 2001 in the New England Journal of Medicine
produced some new results. Data came from the Canadian Study of Health
and Aging. They tried to calculate the exact onset of dementia in 821
people over 65 years old randomly selected from 10,263 volunteers
included in the Canadian study. The actual age of onset was calculated
using proven clinical methods. Then these patients were followed to
determine how long they survived after onset of dementia. After a
careful statistical analysis it was determined that the estimated
average survival rate for all the subjects was 3.3 years, much lower
than previous studies had shown.

Obviously, survival time is very much influenced by age at diagnosis,
severity of the disease at diagnosis, severity of OTHER health issues
that are concurrent, and type of Alzheimer's (familial vs. the sporatic
- the early onset inherited type can move fast, even in a younger
healthy person).

As you can appreciate, the real problem is that having Alzheimer's very
much complicates the diagnosis and treatment of other health problems
that frequently end up being the immediate cause of early death. If a
person can't describe symptoms or answer questions, then catching
health problems is a real problem - you end up watching for changes in
behaviour and then trying to guess what the heck could be the matter.
They are moaning - are they in pain? Is it their stomach? Their chest?
Their head? They can't tell a doctor where it hurts, how long its been
happening, if anything makes it better or worse - all those questions
that help a doctor zero in on what could be wrong.  Submitting them to
various unpleasant diagnostic procedures and tests to diagnose
something in someone frail and elderly may be a real concern as well -
in a person who may need sedation for even a simple procedure, the
family has to think long and hard before undertaking things like spinal
taps or MRIs

Treatments for many major illnesses become a huge problem. Since
Alzheimer's is in itself a terminal illness, the challenge for a family
is whether or not aggressive treatments, surgeries etc. are worth
undertaking. For example, if a person gets cancer, should you put them
through the misery of chemotherapy? Painful treatments may be worth it
in a person who can have a meaningful recovery and return to a good
quality of life, but maybe not in someone whose best case is to return
to a steadily declining existence.

They won't understand the purpose of the treatment, it may or may not
work, it will cause suffering - and surgery and anesthesia often causes
permanent major drops in mental status. People with AD also can't
cooperate with many treatments and therapies - if something hurts, and
they have no clue why something is being done, its scary and upsetting
- even something as simple as basic physiotherapy can be too much.
Quality of life becomes a huge reason for NOT treating many illnesses.

When it comes to AD, the lucky ones who are those who are carried away
by other illnesses - because the natural end of AD is pretty brutal on
everyone. So...if the person does have a major illness such as
pneumonia or cancer, do you treat other than comfort measures (i.e.
pain killers). If they had a heart attack or other sudden emergency, do
you want them to try to recuscitate - or let God and nature take their
course? Do they have a living will expressing their wishes? These
decisions make a difference in how long a person lives - AD is
certainly one illness where the life in their years is way more
important than the years of their life.

The question becomes - is it kinder to let the person slip away from
something else like a heart ailment vs. aggressively treat them and
keep them going (which can involve suffering in itself) and then bring
them back to put them through the inevitable and gruelling end.

There ARE some people who survive years and years with AD, but they are
generally the exception rather than the rule, and they are also often
those who are otherwise robustly healthy, relatively young at
diagnosis, and have their dementia progress slower than average. I had
a neighbour who lived for years and years in the end stage. Bedridden,
unresponsive, couldn't talk, didn't know anyone, slept all the time -
but if you hand fed her and stroked her throat, she would swallow, and
thus, without tubes and artifical means, what was left of her just kept
going. It was just unbelievably awful for everyone involved, given that
everyone knew that that was the very last thing she wanted for herself
(i.e. caught in the twilight zone)..

My MIL was killed by her AD, and it took about 6 years from first signs
to the end - but again, she was only 73 when she was diagnosed and
very, very healthy at the time.

Mary G.

My father-in-law, while not formally diagnosed yet, had shown signs for
over 7-8 years before I married into the family. In 1992, he was
ambulatory, fed himself, recognized family members, beginning to have
occassional bladder incontinence, but not able to make sound decisions
or carry on extended conversations.  By mid1997, he was still mostly
ambulatory and used a walking stick, incontinent, had to set up at
meals, and while alert was not oriented. Mid Dec of that year, he had a
hip fx and went into renal failure at the hospital from which he
"recovered" and two weeks later went to a SNF for a short time.  He had
only been placed for two weeks at a facility prior to falling and
breaking his hip. He never walked again, had to be fed, totally
incontinent and primarily nonverbal.  He passed away in 1999. I still
believe the fracture was the beginning of the end for him.  He was not
the same after that. While I knew he would continue to decline from the
Alzheimer's both cognitively and physically, I think after the
fracture, he lost too much during that time and transitioned to level.

Mom was diagnosed with dementia in the fall of '93 at the age of 74 she's 86
now and still going strong.   It's an extremely slow progression and she
still can live alone with a family member living next door.  I was prepared
to lose her within a few years but you just don't know.   She enjoys her
grandkids and loves to go out to eat.   If she's having a good day, she can
order off the menu by herself just fine if it's a bad day I help her.  She's
more like a forgetful child.   I've not run into anyone else who has known
someone to have dementia this long........

both....average can be misleading through to irrelevant*, and some may well
live 10-15..also depends how early diagnosis is as well, two people might
have identical onset and progression but one might live 5 years longer after
diagnosis simply because diagnosis came 5 years later.  One has only to hear
the many stories of denial from relatives and poor doctoring ("oh thats
normal for someone of 80") in here to know that how soon, if ever, diagnosis
comes, is a random area....and diagnosis itself is far from certain.

Hi Linda,

Just read this whole thread and you got some excellent information.   In
Ida's case, she was definitely showing symptoms for a while prior to being
actually diagnosed, so the date of diagnosis is really not an important
factor, because there is no way of knowing exactly when she started.

She was noticeably having problems in early 2000.
By the time she was tested and we could make plans, she came to live with us
early winter 2001.
She died April 2005.

She did not die of alzheimers, she died of pancreatic cancer that was only
diagnosed in August of 2004.   Like so many others, she was otherwise in
excellent health, good heart, blood pressure, a strong, non-smoking woman
who had been active all her life.

From what I have seen and heard over this last few years, there are people
who live a long time after diagnosis, and some who die of something else,
sooner.   You just never know.  That goes for alzheimers or anything else.

I have heard Peter Rabin of 36-Hour Day fame speak and his "average" is
3 years of forgetting, 3 years of apraxias(not knowing what things are
for, words, etc.), and 3 years of actual physical decline.  Diagnosis is
 a variable and there are always exceptions.  So far for my MIL it's
holding true.  She was forgetful and repetitive for her 80th birthday
and now at 87 has just become incontinent.  Although still ambulatory,
she's vacant, aphasic(can't comprehend the words), no longer recognizes
food and usually must be fed; I can see that the next thing is probably
going to be the UTIs/infections as things slow/shut down.  We keep
hoping for a big stroke-type event, but the reality is that for her-it's
cell-by-cell loss.  Each situation is different.
Beth

Question  
Group: alt.support.alzheimers Date: Sat, Sep 10, 2005, 2:03pm (CDT+5)
From: lppnp@xyahoo.com (LJ)
What is your experience on how long life is after diagnosis? The books
say average is 4-8 years but I read in here where many seem to live over
15 or am I mistaken?
Linda

Ronny:
Your post here reminds me that I need to go to our local cemetery to see
when one of Mom's older sisters died? She also had Alzheimers. But going
by the date of her sister's deathI could say Mom was declining some
mentally,steadily,2 to 4 years before that. And during that time I was
doing my best to deny that or forget about that part. But a couple of
years before my aunt died,we knew she had Alzheimers and we were
visiting her one day. Afterward Mom said how sad it was that her sis had
declined so mentally. That was sad;but at the time,the sad part to me
was that I could see the same decline in Mom. Yet she didn't seem to
notice it at all and I never brought it up or mentioned it to her.

Now I wondering if that last part is normal? Do most people not
recognize the onset of Alzheimers in themself? Only at the very
beginning do I remember Mom getting a bit upset because she was getting
more forgetful. And at that time I just took that as a normal thing that
all older people go through as they get older. At that time I wasn't
even thinking Alzheimers. That really only came up in my mind after her
sis was diagnosed with that and by the time I learned of that,I knew Mom
had the same;but it just hadn't progressed as far.

Interesting to think about this. I fully expected Mom to decline
physically over the years as we all do that and I expected she would get
more forgetful in someways;but not once did I think my Mom would get
Alzheimers. It was like I thought to myself that she couldn't get that.
Other people yes;but not my Mom. Amazing thing denial.