Expert: Mary Gordon - 6/13/2005

Question
My mother, age 71, looks to be in stage 6.  She's had AD for 5-6 years.  Within the last 4 weeks she has become incontinent, talks less, and of a greater concern, seems unable to walk.  She walks off balance, bent over and with a shuffle almost falling.  When we stop and restart - she can't seem to walk normal or upright.  This has been difficult to find info on.  Does this seem right?  Would this decline happen so rapidly?  All the other phases went fairly smoothly and slowly.  Thank you in advance for your assistance.  I live in rural Ohio and it's difficult to get resources.  

Answer
Dear B.

Sadly, the disease is unpredictable and CAN go in apparent fits and starts. Its never a perfectly smooth curve.

It's not scientific but my personal theory is that we all  have a lot of excess capacity in our brains - and during periods of apparent stability or slow decline, a person with AD is actually running through all those redundant neurons even though you can't see much happening from the outside . And then comes the day that the last surviving connection keeping an ability going winks out - and suddenly they can no longer do something they could even days before and the ability is gone forever.  

My mother in law lost intelligible speech quite suddenly over a period of about two weeks in later AD. Before that, she could get out short sentences and phrases, and sometimes answer simple questions - after that - mostly nonsense syllables and garble. It was shocking because it seemed so sudden.
Her ability to walk went up in smoke permanently, following a fall. In theory, we should have been able to get her walking again, but we just couldn't get her back up and on her feet - it seemed to terrify her. She would get very agitated, scream, flail at people - it also seemed to hurt her, and since she couldn't understand our explanations or what anyone was trying to do with her....!  After months of trying with the aid of a physiotherapist, we finally had to admit defeat, and that was it for the rest of her life - another two years. Around the same time, she also became completely incontinent, so again, I expect those key abilities had been held together with "string and glue" and had just gone completely when some tiny crucial part of the brain finally twinked out into darkness.  

You probably know that balance and muscular coordination are controlled by the brain, and that the ability to walk is lost as AD progresses - preceded by just the kind of thing you are describing - the shuffling gait, the leaning etc.

Here is the URL for a really good article on Alzheimer's and falls that describes various aspects of the problem, including what you are seeing.

http://www.agelessdesign.com/nl0101-Falls1.htm

It is also possible that your mother also has other health issues complicating her situation. It often happens that people with AD have more than one health issue  going on that can impact their cognitive abilities - for example, multi-infarct dementia on top of Alzheimer's, or Parkinson's on top of Alzheimer's. As I know you can appreciate, by this stage, it gets very difficult to detect and diagnose the constellation of health problems later Alzheimer's can mask or complicate. Even if you could get them diagnosed, there may not be much point in putting the person through a lot of tests, never mind whatever treatments or therapy might be proposed. Keeping them as happy and calm and content as possible, and comfortable and pain free is probably higher on your list.

Below my signature, I've posted the stages of AD . I hope this helps. I know how very heart breaking this is - especially since abilities like speech, continence and walking are so very crucial, not just for quality of life, but to a family's ability to cope with caring for a person at home.

If I haven't answered your question, or you need more, don't hesitate to get back to me. I think the article will ring several bells with you.

Thinking of you.

Mary Gordon
Toronto

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