Expert: Mary Gordon - 3/28/2010

Question
my mother has recently been diagnosed and she is very agitated.
She swears at everyone,hits the other people at the nursing home
and is almost uncontrollable. What can we do. She has been given
atavan and it doesn't phase her. Also what can we expect next

Answer
Hi Ellen
The first thing to consider is what is triggering her aggression and agitation. You and the staff should be carefully observing and recording. Are there particular activities that set her off? Does it happen more at particular times of the day? Does it happen more when there are lots of things going on around her? Does she give off any signals before she "blows" that things are getting too much for her? What have the staff tried to head off her outbursts? Does touching her make her strike out? Do they back off if she's getting antsy?

I ask all these questions because people with dementia can be just like little ones, in that if they are overtaxed, they can act out. If they are tired, hungry, confused, stressed, they can be right at the end of their ropes in short order. Think of your poor mom as being a person just holding on by her fingernails. She can't make sense of what is going on around her. She may misinterpret things, and get scared. Staff may be rushing her to do things that upset her. There may be too much noise and distraction around her and she can't figure out what to pay attention to. She may not be able to see and hear properly, and may have sensory disturbances (i.e. water on her skin may feel very hot even if it is not). Sometimes difficult activities can be rescheduled to catch the person at their best, and avoid a melt down. She may react with anger to the tone in someone's voice, thinking they are challenging her rather than just being exasperated.  She may feel lost and alone, and have no idea where she is. She may even have forgotten she is an older lady and be wondering where her parents are.

Have they made sure she is not in pain of any kind, and that she has no undiagnosed or undetected infection or other problem (UTIs are notorious for causing behavioral changes) ?

My mother in law got it into her head that a particular very short haired lady who was helping her bathe and dress was a man. She got VERY upset. She would see herself in the mirror in the bathroom, and not recognize herself and think there was a stranger in the bathroom. The noise in the dining room was too much for her and she would get distressed. She finally had to be given her meals in a quiet corner of the ward, instead of eating with everyone else. We stopped being able to take her out of the nursing home, because going outside in the cold and dark freaked her out entirely. Having her teeth put in became a war - I don't think she had any idea what they were and would have a total tantrum no matter how they approached her.  She would have hallucinations and delusions that upset her (for example, she would think that people said mean things to her that they didn't, or that people on TV could see her). Small wonder that she got upset. It was often very difficult to figure out what was going on.

The world becomes a terrifying jumble - and it does help to try to figure out what causes her to get upset and try to change the approach, the timing, the environment - or learn to back off and try again later. You can also try soothing and comforting, music, massage - anything that might calm her down and help her settle.

Having said all that, sometimes nothing works so medication can be considered.. If she is not already on cholinesterase inhibitors (aricept, galantamine, exelon) or memantine, or combinations of the two,  that might be worth considering. These drugs can help improve cognition temporarily and slow down the progress in many people, and can reduce agitation and aggression.  They are not a cure, but they can improve quality of life.

Atypical antipsychotics like quetiapine, risperidone, haloparadol, and olanzapine do help quite a bit in a reasonable percentage of people struggling with agitation and aggression. All these drugs have drawbacks and side effects and don't work for everyone - everything is a trade off, and nothing comes without a price tag in terms of having a down side. These drugs should be tried after everything else. The usual approach is to start at a low dose and gradually increase it to see if a particular medication will help. If it does help, the dose should be reevaluated frequently with a view to reducing it -  because as the illness progresses, people's behavior often changes, and they may no longer need the medication.

The whole point is to keep your mother as happy and content as possible, and as free from emotional distress as can be managed. It can't be pleasant for her to be so upset.

Below my signature I have pasted the most commonly used set of "stage" descriptions for Alzheimer's. My guess is that your mom is in Stage 6. Have a look and see what you think. Not everyone fits neatly into a category (i.e. they may have retained some abilities and lost others).

Hope this helps. I know how distressing it is. She is lucky to have family looking out for her best interests. Talk to the doctors and find out the options. Be prepared to have to do some trial and error testing with various approaches. If you end up trying various medications, it can take a while to find the right one, or the right combination of medications, as well as the right dosage. What works for one person may not work for another, and you don't want the side effects to make things worse in terms of quality of life. You want her calmer, and not zombified or floppy and sleepy.

Thinking of you.


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, which are often referred to as the FAST scale (Functional Assessment Staging). 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 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