Expert: Mary Gordon - 8/31/2008

Question
My Mother is in Stage 6 Alzheimer's Disease.  We moved her to a live-in facility last month.  They are medicating her 2x daily (morning and just before bed) as a way to keep her calmer.  She isn't angry, just very anxious and high energy; she snuck out of the facility once completely, and regularly finds her way to the kitchen, laundry, and other areas past the standard lock down area.  Although she is mentally gone, she still walks and holds her head and facial features similar to a very youthful, clear-minded person.  

Within 4 weeks she had lost control of her bowel movements.  My question is two fold:  could the new medication of sedetives be contributing to the incontinence?  And, if she has all the sysmptoms of stage 6, how long does one usually remain in that stage before moving to stage 7?  Is there additional ways to measure the progression/demise?  Thanks, a loving daughter, Colleen

Answer
Colleen, its extremely concerning that the home cannot keep your mother in the locked dementia ward. Clearly they have a major problem with their security system - this is VERY dangerous. Beyond the locked area (which I hope has security keypads for all doors going in and out on the ward itself, and also on all exterior doors), they should have wander guards on all amulatory residents who wander so they set off alarms if they get off the unit, and again on all exterior doors. Usually that takes the form of a bracelet that can't be removed. There should also be security staff on all exterior doors, who have pictures of all wanderers at the desk so they can be quickly identified. Many units will also put special colored t-shirts on persistent wanderers, so they can be clearly identified by staff, non-demented residents and visitors, so everyone can easily tell who should NOT be let out, even if they appear quite together and with it. There should also be signage warning everyone not to allow residents to leave the locked area unless they are accompanied by staff (i.e. so that when someone comes in they don't let someone out because they assume the person knows where they are going). I'd be demanding the facility tell you what the plan is to keep your mother safe, and if they cannot give you satisfactory answers, you may need to look elsewhere for her care. They are setting themselves up for disaster and lawsuits if they cannot adequately deal with this serious safety and security issue.

You don't mention what medication they are using on her. Generally, the lowest dose possible of a medication is desirable - quite often they have to try a few medications, starting with a very low dose and then increasing it gradually until they see the dsired results. Anti-psychotics often are better than actual sedatives in quieting agitation. Obviously, you don't want her sleepy or floppy, and thus not able to participate in activities or worse, being prone to falls from the sedation.They can use medication to reduce her anxiety, but they should not be using medication as a "chemical restraint" - i.e. by making her a zombie so she won't escape.

On the continence front, as you know, fecal incontinence is part of Stage 6. So...it may be in part from the medication, but it may also be part of the natural progression of the disease. You have every right to ask them to reduce the dosage, and see what happens, or to try another medication to see if the continence improves, but if she was already incontinent of urine, fecal incontinence would be inevitable.   

Its hard to predict how quickly things will progress. With my mother in law, her fecal continence disappeared after a fall, that also marked the end of walking. Her speech went completely a few months later, quite suddenly over a two week period (i.e. before that point, she would get out intelligible phrases and words, and could answer simple questions, after that point, mostly garble and nonsense syllables repeated over and over). She lived about two years after she moved into Stage 7, but she was very healthy overall, and only in her late 70's at the time.

Basically, expect things to progress slowly but steadily. Eventually, her coordination and balance will deteriorate, and she will start to shuffle when she walks, and lean, so she becomes more prone to falling, and may need to be put in a "Merry Walker" or kept in a geri-chair unless someone can walk with her. They usually can't be taught to use a walker, so moving around on their own becomes a concern.  She will talk less and less, move less and less, and start to sleep more and more. A lot also depends on their general health, since you are likely to find that even minor illnesses can have a big impact on cognition. I'm sure you can relate - for example, a bad head cold can make you feel really dopey and spaced out - now imagine that experience for a person with a damaged brain, layered on top of their dementia. They will appear dramatically worse, even if its only for the duration of a short term illness. More serious chronic health issues will also affect their mental status.   

Here is the full description of Dr. Reisbergs last two stages so you can get a feel for the general progression (which won't be identical in everyone).

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 to 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., patients 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  

Hope this helps.

Mary G.