Expert: Mary Gordon - 1/17/2008

Question
We have had my father-in-law in hour home for 2 years. He is almost 96 and has dementia. He has had the disease for about 8 years. Last year at this time he weighed 159 lbs.  Now he is down to 110-113lbs. He only eats 2 meals a day but we can't understand his dramatic weight loss.  Recently he has become very frail and sleeps most of the time.  Usually we have to wake him or he would sleep 16-20 hours a day. We gave him a shower last week and his skin has changed in that it is hanging lose with absolutely no muscle tone.  He also started to make rythmic movements with his hands clasped together and sometimes rubbing his hands on his pants over and over again. It used to be that his mind was deteriorating faster than his body but now it is reversed. He is incontinent both ways and has a catheter that always leaks.  The doctors say that it can't be helped. He wears 2 depends at a time. He can say simple words but can't follow directions at all any more. He forgets where his room is as soon as he walks out of it. We assume that if he isn't in the end stage he is quickly approaching it. One of us is home with him all of the time.  Is there something we should be doing for him?  Should we allow him to sleep as long as he wants?  We believe that if we do that he will become bedridden faster which is not a good thing.  Can you offer any insight into the stage he is in now? Do any of his symptoms seen unusual to you?  We have a visiting nurse who comes to visit. Up until recently we think that she did not realize how bad off he is. He looks good and if asked a simple question sometimes he responds correctly.  This last visit she asked him how his bowel movements were. Luckily I was in the room because he told her just fine.  I said, Joe, don't you remember you never use the bathroom any more you wear depends.  He said no, he wasn't aware of that.  I think she finally saw how much he has deteriorated.  Any suggestions would be greatly appreciated. Gayle

Answer
My heart really goes out to you. Sadly, what you are describing is not unusual at all. Below my signature I have pasted the standard description of the "stages". Not every one will fit exactly into each stage neatly, but you will get the general drift - he's probably in later stage 6.

I'm actually surprised he can still walk and talk. My mother in law died of end stage AD and lost her ability to walk about two years before the end - but then, she was in her late 70's, and overall quite healthy - your father is very elderly and frail, and thus has less "reserve" left to buffer the slide in terms of survival time. You will have to watch his walking very carefully, or consider preventing him from getting up unsupervised. As you can imagine, it doesn't take much of a fall to do a lot of damage. My mother in law broke a hip standing up from a chair. She just stood up and went down like a stone, without taking a step - and she fell onto a carpeted floor. If you think they would help, you might consider hip guards similar to these http://www.hiprotector.com/hippad.html
It doesn't take much to break a hip at 95, and that would be the end of him.

My mother in law also lost her power of intelligible speech about a year and a half before her death - it just sort of "went" over a two week period. She had been losing her ability to understand what was said to her. If you asked her a question, it had to be very short and have a yes or no answer. However, eventually, that went as well, and all that came out was garble. I think at some level she thought she was making sense, but it was just nonsense syllables, often repeated over and over. Very occasionally, a coherent word would come out, but she absolutely could not answer questions at all, and with time, she spoke less and less. Like you, I often saw the nurses and other aides try to talk to her - and I knew they just didn't "get" the state she was in (even doctors would try to quiz her, not realizing she had no idea what they were saying, much less how to formulate a coherent answer of any kind). Sometimes they would assume she was just deaf and yell at her, which was very annoying to us. She may not have understood what they were saying, but she would be upset at being shouted at.

Weight loss is actually fairly common with advancing AD. As you note, he is only eating two meals a day, and its likely he just isn't taking in enough calories to sustain his body weight. Part of this may be from a loss of  muscular coordination which all of them develop, which can impact their ability to chew and swallow - its called dysphagia. You might want to review what you are feeding him, and put the emphasis on smaller, more frequent meals, and making every mouthful count i.e. if you can only get small amounts into him, try high calorie foods. If you think he is having trouble eating, he may deal with thickened liquids better than thin ones, and pureed foods (helps with swallowing problems). I'd be buying Boost, Gain, Ensure - those nutrient and calorie fortified drinks to see if that will help get extra calories into him.  

If he has any other health issues contributing to the weight loss, you know the delimna you face - if he has developed something new, would you put him through the trauma of tests or procedures to diagnose something, much less to treat anything beyond comfort measures? At this point, there is very little to be gained in terms of improving his quality - or quantity - of life remaining.

Sadly, there is very little you can do for him except for what you are doing - treating him with love. He will sleep more and more and be less and less aware, no matter what you do. As long as he is comfortable and as serene as possible, you are doing what you can to give him the best possible quality of life. They often don't appear to feel hunger or thirst like a normal person would - so you may or may not be able to up his caloric intake.

It really is a horrible disease - and he is so lucky to have his son and his wife trying so hard to treat him with such loving care, and look out for him.

I thought you might be interested in this web page from the UK as you will find a lot of what it describes very familiar
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=101

Hope this helps - see below for the stages of AD.

Mary G.
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 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 withdrawl 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