Expert: Mary Gordon - 10/19/2010

Question
Mary, I wrote to you about my husband in early September, we went to his Neurologist again this month and he asked him a few questions and had him try to count backward from 100 by 7's and he could not and that was it. I asked if he would be able to give us a diagnosis and he told me to bring him back at the end of December and he should be as stable as he is going to be and he would let us know. The only medication he is taking is Namenda and he was also prescribed a Cpap machine for mild sleep apnea. This last few weeks since we went to the DR. My husband has started being more forgetful (misplaced his watch) and very aggressive and agitated. I am going to call the DR. in the  morning, I am very uncomfortable with the way he is just blowing up over nothing, he threatens and throws things, kicks stuff ect. I guess my question to you is what advice do you give people that are in my situation, my husband already acts like he hates me half the time and he even blames me for the way he feels, he is still physically fit and I am so anxious about when the next tantrum will happen? How do most people handle the paranoia and aggressiveness? I have read the Alz.org recommendations, but they are more for someone that isn't very strong, my husband is 210 lbs. and strong, I am 115 lbs. also fit, but no match when he is upset. Thanks again you folks are so understanding and helpful.

Answer
Hi Diane, I'm not sure why the neurologist is delaying a diagnosis. As I mentioned to you before,  when you go back, I would ask about combining the Namenda with Aricept, as the combination of the two is more effective for many people than either one alone.
http://www.namenda.com/sections/20/proven-benefits.shtml

I'm willing to bet the farm this is AD. Below my signature, I have pasted the stages of progressive dementia. It is a functional scale, based on ability, and represents the general order in which symptoms appear and abilities are lost. Everyone is going to be a little different, and it is common for a person to not fit perfectly into a category, but this will give you a good feel for what is coming next, and what you should be prepared for.  This scale does not give you a time frame - some people will progress slowly but steadily, and some will plateau with periods of more rapid decline before another plateau.

My guess from what you've told me is that he is likely at least in Stage 5.

You will want to ask about anti-depressants or anti-agitation meds to reduce his distress, as if he is agitated, he may strike out or act out in other physical ways that you may not be able to manage. He will not have self control or self insight. He will be like a toddler in that he will not recognize his own strength, and may act out when frustrated. It's one thing to be swatted by a two year old, another by a 200 pound man.  Let the doctor know your concerns about being able to physically manage. Your safety is important. Give some consideration to finding someone to sit with him every now and then - whether a hired person, a neighbor, a friend, a relative, or a member of your faith community. You need a break from him every now and then, and sometimes they will be behave better with someone outside the household around.

For example, my mother in law really, really resisted bathing, but for some reason, she'd go along with it much more placidly if the hired aid helped her rather than family. I guess somewhere inside her was still the knowledge that we don't have our tantrums in front of strangers!

You will have to watch him carefully and see what sets him off - he may give off subtle signs before he "blows" that will let you know it's time to back off. If you can, try to schedule challenging activities for when he's at his best, which is likely to be when he is well rested, fed, and relaxed. Often their tolerance goes down over the day, as they get more tired and stressed. Just think about how stressful his life is. The world is becoming a jumble that swirls around him and makes no sense, and it takes all his attention and effort to try and hold on.

Keep in mind, he can't see what is apparent to you - he is oblivious to his deficits, even when his problems are screamingly obvious to everyone around him. It's part of the disease. He has a damaged brain. No amount of arguing, reasoning, confronting, persuading is going to work. His logic processor is broken. Even if you could get him to understand five minutes later he would have forgotten the whole conversation. The funny thing is sometimes they stay upset about an argument even when they can't remember what they were upset about, so its better not to wind the person up. Keep telling yourself that this may look like him, but he is profoundly changed by his illness. He is NOT doing this on purpose - he can't help himself. It's the disease. He's doing the best he can with what his brain will allow, so try not to take it personally. Being annoying, stubborn, rude, hurtful - all those labels require an intact brain to plan out the results of your behavior. He is not capable of that. He really is like a little kid. He is living in the now, and he can't see the consequences of what he does. You pat, you soothe, you reassure, you commiserate, you hug and cajole - and then you distract and divert.

Here are 10 fabulous rules for dealing with a person with Alzheimer's, as collected by Dr. Robert Stall.

1. Never argue, instead, agree
2. Never reason, instead, divert
3. Never shame, instead, distract
4. Never lecture, instead, reassure
5. Never say remember, instead, reminisce
6. Never say "I told you", instead, repeat
7. Never say "You can't", instead, "Do what you can"
8. Never command, instead, ask or model
9. Never condescend, instead, encourage and praise
10. Never force, instead, reinforce

This is not your fault - and he is not doing this on purpose.

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 Alzheimer's disease. Even now 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. Today it is often referred to as the FAST Scale, which is short for Functional Assessment STaging. It gets used for many types of progressive dementias because it gives a common language for describing where a person is in their illness.

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