Expert: Mary Gordon - 4/19/2008

Question
QUESTION: Mary,
My father is in the end stages of AD.  He is currently in a nursing home/rehabilitation facility. He was being cared for by my mom at home, got sick, could no longer walk, taken to the ER, they found pneumonia and lung cancer (3/08).  He has been given depakote in the nursing home and he is virtually comatose according to my mom.  She has requested a decrease in the meds as he is sleeping all the time, and not able to participate in his therapy.  Is this normal behavior for depakote?  It seems like he has had a high sensitivity to other meds in the past for his AD treatment.  But this is rather disturbing.  How much do we chalk up to the natural progression of the disease or the meds?
Thank you,
Ann

ANSWER: Hi Ann

I take it the depakote was given to him to curb some agitation/aggression or other behavioral issues. If that is why it was prescribed, your mom has a good idea. If its not for some other issue like a seizure disorder, the time for this meds may be over, and you have nothing to lose by backing off on it and seeing if he perks up.

Here is an article about the use of various meds for agitation/aggression.

http://www.globalaging.org/health/us/2004/alz.htm

If this is a drug they started in the nursing home, unless he was hostile and combatative, you should actively question the purpose of such a drug.

Any kind of illness on top of the Alzheimer's will really impact his cognition. Even a bad cold can make the person seem to be much worse in terms of their dementia. Its as though they are just holding on with their fingernails, so any added stresses will push them down. He may recover a bit of ground if he recuperates from the pneumonia. I can recall my mother in law becoming shockingly confused quite out of the blue when she was Stage 5, and it turned out to be from a minor infection. She did "come back" when the infection cleared.

If your father was walking and talking just two months ago, until the pneumonia hit him, he is most probably Stage 6 rather than Stage 7. His other illnesses can be contributing to his  current mental condition.

My real question for you is - at this point, what "therapy" are they giving him? If he is in later Alzheimer's, and also has lung cancer, might it not be time for palliative care?
Just something to consider. Its all about comfort, peace, and the best possible quality of life at this phase.

Below my signature, I have pasted the most commonly used stages of Alzheimer's. You will see that from the Alzheimer's alone, they do get to the stage where they cannot walk, talk, speak etc, and they sleep most of the time. However, I am not sure if what is going on with your dad is in part due to the very major illness he has, and the infection that he is recuperating from, or from side effects from meds and other treatments  he may be undergoing. I'd talk to the doctor who prescribed the depakote, find out what it was for. If it was for agitation, and he is currently sleeping all the time, I'd cut it back or discontinue it entirely and see what happens.

Hope this helps. You and your mom are asking the right questions. He's lucky to have you looking out for him.

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 infamiliar 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

---------- FOLLOW-UP ----------

QUESTION: Mary,
Thank you for your response. The doctor prescribed the depakote because the nursing staff told him that my dad was combative.  We have no first hand knowledge of this. My gut says that they are prescribing this because he was labeled with Alzheimers and they are using it as a preventative measure.  The therapy you questioned, is therapy for his walking and weight bearing.  Since he was walking one day and not the next (when he got pneuomonia) there was some consideration that once the infection was cleared up, he may be able to walk once again with a walker. So, he was moved from the hospital to the nursing/rehabilitation facility.  Once there, he has declined even further.  I live in Texas, my parents are in Florida and my mom is his best advocate.
She is amazing.  I was just trying to get some direction to the many questions swirling around.  Thanks for your time.

Answer
HI Ann, didn't mean to infer he shouldn't have any therapy or treatment. I just wasn't sure if it was for the cancer, which as you know, can be very hard on anyone, never mind someone in later dementia when they can't understand or cooperate with what can be scary or uncomfortable treatments.

I'm guessing the rehab place is not expert in dealing with dementia - i.e. the staff don't have the training and experience to properly approach a person with dementia, and recognize the signs that things are getting to be too much for them. As you know, the outbursts are often called "catastrophic reactions", and a smart care provider usually can see the signs of stress building and back off and try a different approach. It also helps when challenging activities are scheduled for when the person is at their best mentally (i.e. rested, fed and relaxed). In effect, they are using the depakote as a kind of chemical restraint and to put him on such a powerful drug as a preventative measure is inappropriate.

If he isn't making progress, and he's actively deteriorating, it might be time for your mom to consider another alternative, such as a facility that specializes in dementia care. I know the options are not always great - either in number or quality.

My mother in law broke her hip in early Stage 6 - she stood up from a chair, and went straight down like a stone without taking a step - onto a carpeted floor, and that was it. Although the hip was surgically repaired, we were not successful in getting her back on her feet. Like your dad, in theory it should have been possible (i.e. physically there was no real reason she shouldn't have been walking with time). However, because of her cognitive condition, she couldn't understand the purpose and goals of therapy, or cooperate. It hurt, she was frightened being upright, her muscles were weak which made her wobbly - so after a lot of trying by a lot of family members, caregivers and  therapists, we had to throw in the towel. Even being walked a few feet supported between two people was overwhelming and terrifying for her - she'd panic, scream, even try to grab people etc. which may be similar to what your poor dad did.  Alzheimer's affects muscular coordination and balance (this is what leads to the shuffling walk, the leaning, and ultimately the loss of walking) and their depth perception (they literally can't tell how far away the floor is) which adds to the challenges. We also found she just couldn't learn to use a walker at all - its as though every time she saw it, it was the first time, and she had no clue what it's purpose was.    

By the way, when she was in the orthopedic ward for the hip repair, the staff were clueless about dementia - just to give you an example, if she didn't respond to verbal instruction, they yelled at her, assuming she just couldn't hear them. They also would bring trays of food with heavy covers on them and just leave them in the room - and at her stage of dementia, unless the food was actually put right in front of her, she would have no clue that under the tray cover was a meal for her to eat. They also brought inappropriate food  - i.e. pork chops etc. that required cutting and chewing that she was not capable of. If family hadn't been there almost all the time, lord knows what might have happened. Your dad may have becoming agitated just because of the staff not understanding his condition. He likely has no idea where he is or what is going on - it has to be very stressful. Most rehab places are just not equipped to deal with patients like your dad.  

I feel for your poor mom. It must be very disheartening and frustrating, particularly when she has been caring for him at home and now sees him deteriorating in the care of others.

Thinking of you.

Mary G.