Expert: Mary Gordon - 4/7/2008

Question
Hello Mary. I was wandering if you could inform us on how long can the final stages of AD last. My mother is only 61, but is clearly, based on what I've read, in stage 7 of AD. She is completely unresponsive, screams alot, but we cannot usually understand what she is screaming, and is very hard to feed. My father is caring for on his own at home with limited help from us kids. My sister and I go over each once per week to help. Sorry to ramble on and on, but we were wandering if there was an actual time table for stage 7 of AD. Thank you so much and I look forward to your response. Ryan Sommer

Answer
Hi Ryan,

Unfortunately, survival time is a very hard thing to gauge. Its particularly difficult in someone as young as your mom, since she is not the same as someone very elderly and frail, with all kinds of complicated health problems that can shorten their lives.

I am a bit surprised she is still so agitated, since most of that has usually passed off by the end stage, along with everything else - usually they are very docile, mostly because they have lost the ability to do anything else - they not only have no clue where they are, who they are with or what is happening, they don't know enough to care. If she is upset quite a bit, you might want to talk to the doctor about some medications to make her feel more calm, since the goal at this stage is to make her as comfortable and serene and happy as possible. It must be very hard on your dad if she is like this a lot - which in turn is bad for her, since if he gets worn out, no one is helped, as she will have to go into a facility or other alternative.

I know this is not what you want to hear, but your mother could live for several more years. Its very hard to say. My mother in law was in her late 70's when she moved into the final stage, and she lived a full two years after she lost the ability to walk and talk.

I'm very concerned about your dad trying to look after her alone. He may have trouble asking for help, but he's pretty much 24/7 and that is too much for anyone, even with being spelled off once per week. Can he get help from anywhere else - hire someone to assist, get volunteers from his church or neighborhood? As I said, if he gets run down, he won't be able to continue, and then your choices are none of them ideal.

Many people in later dementia have a lot of trouble chewing and swallowing. Have you moved her to diced or even pureed food? When they are having difficulty, pull out all the stops and throw away the rules. Think of nutrient and calorie rich foods like custards, high fat yoghurt, ice cream - whatever you can get into her, or she will start to lose weight and really deteriorate. The problem is called dysphagia (i.e. loss of muscular coordination required to chew and swallow).

Have you and your family discussed palliative care? If she were to develop some serious health problem, would you want her taken to hospital, given tests and treatments that may be uncomfortable or frightening? Would you want her resuscitated, have tubes, IVs, catheters, a respirator? Where would you draw the line? Drugs for pain? Drugs for infections? These are things you need to discuss with your dad, so you are all on the same page, and ready to support each other through this very difficult phase. You will want to find out how to qualify for hospice care in your area as well - in some places, there are physical requirements (i.e. the person can't hold their head up, and seems likely to pass away in 6 months). Your mom's doctor should be able to assist.

Hope this helps,

Mary G.
Toronto

Here is a description of the last two stages so you can get a feel for where she is.

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