Expert: Mary Gordon - 1/17/2009

Question
QUESTION: I'm wondering about average length of life once the patient reaches the end of stage 7.  My mother cannot talk, smile, or hold up her head.  She walks only with heavy, heavy support leaning far forward and to the right.  She is still eating fine (I have to feed her.)

ANSWER: Hi Norma, its so hard to predict survival time.

You've seen the Reisberg or FAST stage description of the end stage.

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

I'm a bit confused that you say she can't hold up her head, but she can still walk a bit. When they say "ability to hold up head", they really mean a person who is totally slumped, and can't even sit without being propped in place. Your mom is probably a 7B.

Survival time is affected by the person's age, and overall frailty. After all, a person with a constellation of health issues who has dementia, is going to experience all kinds of risks that a very healthy person will not experience - and they often are carried off sooner by complications of their non-dementia problems.  Families often opt not to treat serious health problems that develop (like heart problems, cancer etc.) because the person is too confused to undergo painful or frightening procedures or cooperate with therapies etc.

My mother in law, for example, was quite healthy. She had some of the common annoyances of senior years, like cataracts and arthritis, but her heart, lungs and other organs were very healthy. She had no diabetes or cancer or any other chronic life threatening problems. She lost her ability to walk after a fall, and continence and speech both quickly went. However,  then it was two years until the end. It was a very slow spiral. She very gradually got thinner and weaker, and slept more and more. Finally, she stopped eating. No matter how we coaxed, or how many times a day we tried,  she took in less and less food and drink over a period of about 6 or 7 weeks, and lapsed into a coma. As I've told other people, it really seemed as though she wasn't hungry or thirsty. If she did feel anything, I don't think she understood what the sensation meant. She really didn't seem to know what the food was for - she just had zero interest. She also didn't appear to be in any distress or discomfort. She just slept and slept, and when she was awake, didn't seem aware of her surroundings or who she was with.

In many places, eligibility for hospice care require the person to be expected to die within 6 months. The indicators often used include a recent history of weight loss (i.e. 10% over the last 6 months), repeated infections such as aspiration pneumonia, kidney infection, septicemia or bedsores, recurrent fevers, and inability to hold their head up. Some places use the Karnofsky Performance Scale (i.e. the person must be at  or below 50%)
http://www.hospicepatients.org/karnofsky.html

Having said all that, we did opt for palliative/hospice type care for my mother in law, but she never went through chronic fevers, infections or any bedsores. She just slowly dwindled away.  However, had she developed any life threatening infections or other health problems, we would not have treated them beyond comfort measures (for example, if she'd developed pneumonia, we would have wanted her free of pain, but would not have permitted her to be treated aggressively with antibiotics and oxygen, taken to hospital etc. We also had a DNR on her. The caregivers were quite wonderful. She was very peaceful and seemed very comfortable and content.

My guess would be your poor mom is not quite in her final months from the dementia itself - so she may survive as long as another year. Here is a good article about risk indicators.
http://www.jfponline.com/Pages.asp?AID=2805

I do know how hard this is, and how you feel that neither of you can take much more of this slow agony. We did pray that something merciful like a flu might swoop in and set my mother in law free, saving her from the final stage, but it was not to be - it was the dementia that finally ended her life.

Thinking of you. Hang in there.

Mary G.






---------- FOLLOW-UP ----------

QUESTION: Thank you so much.  I know there is no clear way to predict since every individual varies so much.  But to try to clear up your confusion - Mom is quite slumped over -she can only sit up in a chair with arms and pillows propped up to hold her.  She cannot be left in a chair without arms or she would fall out of it.  Her head is hanging to the right (whole body leans to the right) and down so that it is difficult to feed her because you have to approach from below.  Her "walking" consists of her being draped over my arm with her shuffling her feet behind her and her legs sometimes buckling under her.  She cannot take a step alone at all and can only go very short distances. Anyway I don't know if that changes your assesment of her or not.  She is under hospice care and they have been wonderful but they too make it clear that the six month rule does not necessarily apply to Alzheimer's. Again thank you so much for your kind words - it helps to talk to someone who has been there.

Answer
Norma, thanks for explaining. I'm amazed you can get her upright at all. My mother in law would screech and claw if we tried to stand her up. I think she was so weak, and the floor looked so far away from her depth perception problems, that she was totally terrified. She got me but good a couple of times with her nails when I was trying to move her from a chair because she'd clutch my arm like she was hanging over a vat of alligators.  

As you say, its so hard to know - I'm glad the hospice workers have said that. Really, when it comes down to it, a declining caloric intake and subsequent weight loss are probably the best sign, since the "anorexia" (loss of appetite and interest in nourishment) leads to weakness, a declining immune system and organ failures.

We did have a neighbor who lived on for a very long time in the end stage just because she would open her mouth if a spoon was put to it and swallow reflexively if her throat was stroked, so they managed to get a reasonable amount of food into her. She was completely helpless and unresponsive and no one could believe that she lived on.  Hers was a very unusual case. She ended up outliving her husband, who had been hale and hearty and her caregiver a very long way into her dementia.

The more common situation would be that they get so weak, they catch an opportunistic infection - even a cold or UTI. Because they have no fight left, they can be overwhelmed and it turns into a pneumonia or something else that tips the balance, and they pass away.

Or, like my mother in law, they just stop eating and drinking. We tried everything, but she took in less and less, and would push your hand or the cup away (or just hit out, like we were buzzing flies annoying her. At the end, my husband was there (her only child), holding her hand. We were the ones in turmoil and distress, not her. She just kind of drifted away quietly.

We're none of us prepared for this stage when all you can do is watch and wait.

Mary G.