Expert: Mary Gordon - 3/26/2006

Question
Hi

I have been my mother's primary caregiver six years now.  In April of 2000, she had a stroke and the doctors told us she had been suffering from Alzheimer's for some time based on the degree of brain atrophy shown by the MRI.  I believe she suffers from mixed dementia (vascular and perhaps Alzheimer's) because I have done alot of reading on the progression of Alzheimer's and she does not fit the usual patterns. I have had trouble placing her in a stage (and I know every case differs) but she fits the symptoms in different stages but doesn't have all or even most of the symptoms in a given stage.  For example, she has been incontinent (both urinary and fecal) a great deal of the time since the stroke, has almost no short term memory, yet knows me and other family members and makes good sense when we interact with her on a basic level.  In the last two weeks, we (myself and the caregive who stays with her while I am at work) have seen a definite change -  she is sleeping more and eating less.  She will sometimes sleep till 12:30 or 1:00 p.m. then doze on the sofa till 4:00 p.m. or so.  She will wake up for a few hours but will be ready to go to bed about 8:00.  Could you give me your opinion on what this change might signify?  I am having a hard time getting any sense of where we are in this long, difficult journey.  It's hard to place her in a stage and even though I know average lifespans and rates of decreasing mental and physical abilities differ, from  emotional, physical, and financial standpoints, I feel I could plan and carry on better if I had some sense of where we are in the progression of her dementia.  I know it's a tough and maybe vague question but I bet your are used to those kinds.

Thanks, Marian Lee

Answer
Hi Marian,

As I know you fear, this could be a sign that things are progressing to the point where she is shutting down for the final stages - but given her overall pattern, and the sudden onset (vs. a slow slide) you have to wonder if she has some undetected health problem, such as a urinary tract infection.

Given people with dementia are often holding on with their fingernails, almost any health issue can make their cognition go for a loop. My mother in law, for example, once got a cold, and the impact on her was dramatic - she went from being relatively alert to being very confused. I suppose it shouldn't be surprising given that many normal people can feel quite dopey and not with it from things like that - and we have lots of excess capacity left in our brains.

A relatively minor illness like a UTI in the elderly with any cause of brain impairment can can result in significant behavioral changes. It is always worth consideration that changes in behavior may be due to infections like a urinary infection or constipation etc. As you may know, the risk of UTIs increases with age.

Below my signature I've pasted the stages of Alzheimer's for reference, although I know you've seen them before.  Your mother is going to be a bit different because she has a combination of localized brain damage from a major stroke, combined with ongoing deterioration from some Alzheimer's like progressive dementia (and I know you know there are several causes). She may, as you suspect, also have multi-infarct damage happening at the same time, essentially taking random potshots at her brain over time.

The stages do tend to be descriptive of the global damage pattern leading to death from the brain damage itself - when a person gets to the point where their brain literally can't run their body, and they shut down and die.

My mother in law was certainly quite classic into the last stage. She lost her ability to walk and talk about two years prior to the end and became incontinent. After that, it was a gradual drifting away. She had to be hand fed a soft diet as she had increasing trouble feeding herself, as well as chewing and swallowing, she no longer knew who we were, she slept more and more, and was really quite vacant - and ultimately, she couldn't even sit up herself, but spent her days propped in chairs or in bed. Then she stopped eating and drinking - she didn't appear to be suffering at all. It didn't even appear willful - she didn't seem to feel hunger or thirst (we kept trying with her), and she didn't seem to know what the food was for.

This doesn't quite sound like your mother, so you might want to take her to the doctor to find out if there is any health problem that might be quietly going on that could cause the cognitive change  you are seeing.

Once you know, yea or nay in terms of some factor like an infection or other disease process - or perhaps nothing at all but her dementia progressing, you may have to decide what to do about her situation. Do you want palliative care only (i.e. comfort measures such as painkillers etc.) and no active treatment for any potential infection or other disease? A lot of what you have to consider will of course depend on what might be causing what you are seeing. Obviously, something like a UTI can be easily dealt with, and she'll perk up in short order with some treatment.

Its a rough thing to think about - but only you know her and her wishes, and what she has left in terms of quality of life. You may have already thought about this - but in case the spectre of feeding tubes and IVs are raised, you will have to think that area through as well.

My take on them is that they are worthwhile if they are needed very temporarily to get someone though a short crisis, but they are not a good idea longer term (i.e. they don't prolong life or prevent suffering).

I sense you are getting fatigued in the long war - I wish I could tell you a more specific answer. Its impossible to know - she may be heading into the final spiral, or she may live another few years. Are there any family or community supports to give you a break or spell you off? Have you considered respite care so you can take a little breather? You want to take care of yourself - letting yourself burn out won't help her or you - and I know how much of a toll the longer term vigil takes on people. Its so hard to have to watch someone you love decline, feel responsible for looking out for them, and not be able to do much other than stand by. It really is like unending incremental dying, leaving you to grieve incessantly for so long you wear out emotionally, physically and mentally.

Have you talked to family about getting you a break in terms of someone else stepping in for a few weeks, or perhaps placing her for a short term stay? Give yourself permission to contemplate some alternatives.

She's lucky to have you. Hang in. Give the doctor a call and see if he or she can find any signs of illness - I know it can be hard to detect in a person with impairments.

Thinking of you

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 refer to 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 withdrawal 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., 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