Expert: Mary Gordon - 3/7/2011

Question
I am 46 years old and am the primary caregiver of my mother who is 88 years old and has been diagnosed with alzheimers.  My father passed away 4 months ago and thats when i moved in with my mom.  In this 4 months i have seen daily changes in her and here lately its gotten worse.  My question is this, my mom can eat up to 4 meals in a 4 hour span and still tell me she is hungry.  I give her portions and she will let me know if she is not satisfied.  Her doctor has ordered a CT scan.  I know her brain is not registering that she is full but how do i know how far gone this disease is on her and what should i be expecting from here on out?  Its been over ten years since she was diagnosed.  Thank you

Answer
Hi Rudy, if she's been diagnosed for over a decade and is still walking and talking and feeding herself, she is doing amazingly well.

A first step that might help you is to purchase a good general book on Alzheimer's. A useful title is the 36 Hour Day by Mace and Rabin, but there are others.  
http://www.amazon.com/36-Hour-Day-4th-Alzheimer-Dementias/dp/0801885094/ref=pd_s...

Many of the books categorize symptoms into stages, but since this disease progresses in such unpredictable ways, I personally haven't found the description of stages all that helpful (i.e. the stages are artificial divisions of a gradual continuum and this doesn't tell you WHEN something specific will happen to a loved one.) Stage divisions do give you a feel for the order in which abilities are generally lost. As you probably know, Alzheimers is considered a fatal illness, and takes an average of 7 years from first symptoms to causing death - although there are people in whom the disease progresses much more quickly, and those for whom it takes much longer - and obviously, your mother is one of them.

Another thing to keep in mind is that in the frail elderly, there can be more than one cause of dementia happening at the same time. For example, the person can have Alzheimer's and also be having mini-strokes. What you describe regarding her appetite is more typical of a frontal lobe dementia than Alzheimer's, which may be what the doctor wants to look for (i.e. a frontotemporal lobe dementia). Other than satisfying his curiosity, having that answer won't necessarily mean anything to you in practical terms.

Here is a good article about how dementia affects a person and how memory functions. I found it very helpful, full of insights and useful tips.
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

Below my signature I have pasted the most commonly used set of stage descriptions, so you can get a feel for what is likely to happen next. My guess would be she's in Stage 6.

Hope this helps. You should be prepared for next steps. It is unlikely you will be able to cope with her alone at home much further into the illness.

Mary

Stages of Alzheimers

In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of dementia. 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.
It is referred to as the FAST Scale (the Functional Abilities Staging Tool), and it gets applied to many forms of progressive dementia.

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 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