Expert: Mary Gordon - 10/10/2006

Question
Hi,
  I hope you can help us because we are at wits end.  My father-in-law has dementia.  My wife and I guided them thru process of selling their home and moving into an independent living condo in a step place which supposedly has nursing care built in.  
   My mother in law has been complaining for over a year that dad is driving her crazy because he asks the same question 30x and waunders around at night and just seems like a lost soul.  She has kept his behavior under control but lately she has gone into the hospital and is now in respite care for who knows how long.  My wife has had to take an absense from work and lived in their condo and taken meals with him in the dining room, etc.   Now she is a nervous wreck trying to be dad's mind for him.  Now he is at our house and she is always awake listening for him getting up and I can see the effect of the stress on her.  
   I have dealt with people with dementia and urged her to speak with his doctor.  The doctor is not help at all and she couldn't care less.  She prescribed Arecopt and some other drug but it isn't working, he is still all fretful.  I urged her to get a referral to a doctor that specializes in this but that has become easier said than done.  
    I have also urged my wife to look at her dad like our children were when they were small and guide them through each step of the day.  But she has a big problem treating her dad who was such a great man as a little kid.
     At the independent living place they told my wife that her father cannot be left alone but that she cannot take meals with him.  This drives him batty as he can't understand it.  They also are scruitinizing him as to whether they can stay there.  Yet nursing care doesn't seem needed yet and it would kill her mom to be separated from him (yet that is also changing with her)
    In other words she is at her wits ends and nobody seems to care.  Can you offer any suggestions?

Answer
I think you know the answer - and I know its just agony to face. My heart goes out to you and your wife.

Below my signature I've pasted the stages of Alzheimer's. My best guess on the basis of what you describe is that he is in late Stage 5 or early Stage 6.

Here is the thing - and I know you know this in your gut  - he's probably much, much more impaired, and on many more fronts than your wife is able or willing to admit. She is going to see what she wants to see. He still looks like her Dad, his voice sounds the same, his personality and mannerisms may seem like the same man. However, in profound ways, he is no longer that man. If you were to have him put through some cognitive tests (the kind of tests they put a child through looking for learning disabilities, the results would probably make your hair stand on end.

When we had these tests done on my mother in law (at the urging of the geriatric specialist psychiatrist who diagnosed her), it was like the floor falling out from under us. If you had met her socially, you would have thought she was perfectly fine - and not realized she could no longer understand number sequences, read and understand text (she could read it, just not make sense of what it said), couldn't pay bills, couldn't tell time, handle money, read a calendar etc. etc. etc.

He needs supervision and supporyou plan t 24/7, and right now is  as good as it gets. He will get worse from here, much, much worse, and there is no way to sugarcoat that fact. Alzheimer's is the one disease where it pays to be completely pessimistic - to plan for the worst, and then be pleasantly surprised when things progress a little slower than you feared is MUCH better than hoping for the best, and being plunged into crisis when things go south in a hurry.

If your mother in law can't manage him now (and sounds like that is true, even if she didn't also have health issues complicating the situation), she certainly won't be able to manage him a month from now, six months from now, or a year from now as his needs continue to increase (i.e. when he needs help with bathing, dressing, toileting, and can't be left alone for a minute for fear of wandering, or getting into trouble with appliances, strangers, hot water taps, you name it).  This doesn't get easier - it gets harder and harder, and he will need much more help than your wife, her mother, or obviously...the facility he is currently in can provide.

Couple of things - time for a new doctor, no question. You need a doctor who is prepared to help you come to grips with this, and one who can refer you to help - and I don't just mean with your father in law. Sounds like your wife could use some straight talk from a specialist in dementias (either a neurologist or psychiatrist) and maybe some support from people who have walked a mile in her shoes - perhaps some local Alzheimer's groups.  She might want to visit alt.support.alzheimers, a newsgroup to ask some questions.

You need a doctor who will take the agitation seriously - its not just about "managing" his behavior, although that is important to his caregivers (i.e. an agitated man can be a danger to himself and others, even unintentionally). Its also about improving his quality of life. It has to be miserable for him, being upset, confused, and anxious. He must be just about at the end of his rope trying to cope with the swirl life has become. Many people with AD with agitation are helped by antidepressants and antipsychotics like Respiridol.  A good doctor will work with the family to come up with some combination of drugs at the lowest dose possible that result in the best possible frame of mind and level of alertness. You don't want him zombified - just in the best possible frame of mind to enjoy what he has left in terms of quality of life.

And more painfully - time to shop for a new place - certainly for him, possibly for both of them. If the administrators are already expressing doubts about him, time to take this seriously and start shopping. There may be facilities with specialized dementia wards that also have assisted living sections in the same building - i.e. find a spot that has a secure dementia unit under the same roof or in the same complex as whatever level of assistance your mother in law needs. You want her to be able to visit him easily. Obviously, its best for both of them if they can spend time together but from here on in, his real needs will diverge from hers in terms of care, particularly if her mind is intact, but her health is failing in other ways.  

I am so, so sorry your wife is facing this. I know how hard this is. I hope this helps. Its just completely unfair.

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, 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