Expert: Mary Gordon - 2/11/2009

Question
I am a 21 year old college student and very close with my family.  My grandfather is 79 and seems to be in the moderate and severe stages of AD.  My grandmother is the primary caregiver at home with the daily help of her 5 children and some grandchildren.  At this point in his life, he is refusing to eat and drink fluids.  There are times when he walks and constantly is changing chairs throughout the house.  He wanders a lot some days.  Then other days he will not move and only wants to sleep.  He does not sleep through the night though, and he also has lost control of his bodily functions.  He day to day routine has to be done my caregivers.  I just really want to know from my description what you think the next phase is?  Could you tell me what you see for his future stages?  I know there is no definite time frame from AD, I would just like to know what lies ahead and how fats it could come.  Also he is on an insulin shoot because of sugar levels and he weighs probably 110 lbs.  Thank you so much for your help!

Answer
Hi Clair, below my signature I've pasted the most commonly used set of "stage" descriptions. From what you say about your grandfather, he is likely in later Stage 6.
You can see for yourself what comes next. He will talk less and less. He will lose his muscular coordination and ability to balance, and stop walking. He will sleep more and more and get weaker. His damaged nervous system means that he will have trouble swallowing and chewing, and he may not feel hunger or thirst like a healthy person. They usually eat less and less over time, and become very frail. Eventually they stop eating and drinking, and just gently fade over a few weeks or days.

I know this is terrible to watch, but in many ways, this will be harder on your and your family than on him. His brain damage will mean that he is not really aware of what is happening to him. He is living entirely in the moment, which means he is not worried about the past or the future, which is a wonderful blessing. He won't really know where he is. He will be like a tiny baby and only aware of his sense of being comfortable, loved and safe.

My mother in law died of end stage Alzheimer's, and it was a very peaceful, gentle passing. She did not seem to be suffering in any way - not physically, mentally or emotionally. She survived about two years after she stopped walking, but she was very healthy other than her Alzheimer's, and had not lost as much weight as your grandfather.
Although it is very hard to predict, I would guess he may have another year or two. His diabetes certainly can contribute to a spiral downwards.

Once their dementia gets to be quite advanced, and they are losing weight, they become very susceptible to infections. They don't have any reserves left to fight with. It doesn't take much - sometimes a little cold will overwhelm them and turn to pneumonia.

It is also very hard to manage his other health problems, since he can't really answer questions or describe his symptoms. He also can't cooperate with treatments or therapies, and it may not be worth putting him through anything that might be painful, or upsetting to him. He won't understand the purpose of medical procedures or tests.

The important thing for your family now is to talk to your grandmother about the last stage, and what she wants for him. If he got sick from anything, would she want aggressive treatment? Would she want him resuscitated if his heart began to fail? Taken to hospital and have tubes and IVs? At what point would she be ready to consider palliative care only to keep him comfortable and out of pain? Can she manage him at home during his last months when he won't be able to walk? These are very upsetting things to contemplate, but it is worth thinking about, so you are ready to support both of them through this journey.

You are wise to be thinking this through - you must be a very caring person, and your grandparents are lucky to have you involved.

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 referto 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