Expert: Mary Gordon - 5/21/2007

Question
mary my dad hits me all the time for no reason and he gets a look in his eyes like he wants to kill me, he hits my brother he spits in our face and i can't take him to the grocery store because he tries to hit and spit on strangers i don't what's going on but i love him so much i hate to see him in a nursing home we already tried that he fell 3 times in ther and the last fall he got 7 sticthes in his head. his dr. has upped his meds i'm running out of options. thank you

Answer
Aah, now I see what you are facing.

What you are seeing is catastrophic reactions - he lashes out when things are too much for him. Its kind of like a toddler tantrum - and I'm willing to bet money that its worse if he's tired, hungry, unwell, if there is a lot of demands being made of him, or there is too much going on around him. Many people are worse at certain times of day - sundowning is actually a term for this happening at the end of the day (again, the person may be tired, there are low light levels and there may be end of the day bustle going on - a deadly combo for a person in later stage AD.

Some families find they get to the point where they can read the signs of approaching meltdowns and fend them off by backing off - it can also help to know the pattern. If, for example, he freaks out over bathing, he might be better if you tackle that at certain times of the day (maybe in the mornings after breakfast). Does he give off any signals he's getting overwhelmed? Maybe some body language that needs to be paid attention to because it tells you he's getting ready to lash out and its time to just cool the situation off?

What meds do they have him on? Some people are really helped by Respiridone, Seroquel or Zyprexa (antipsychotics) and many are on a combination of something like Respiridone and Zoloft (an antispsychotic and an anti-depressant). Respiridone has been associated with increased risk of stroke, but given that AD is a fatal illness, it may be worth the trade off if the drug improves his quality of life. It can't be a happy situation for him or you when he is this agitated.

Why was he falling in the nursing home? Were they sedating him? Obviously they can't cope with a person who hits (i.e. they have a ward full of frail elderly who are vunerable to injury), but making him into a zombie isn't helpful either.

He sounds like he is in Stage 6 (described below). I have included a description of the last stage as well, so you can get a feel for what lies ahead.

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   

So, this WILL pass off, but when it goes, he will also have lost other abilities (there won't be aggression any more, but there will be less of everything else). Many families cope well with home care until complete incontinence sets in (and it will inevitably). Its impossible predict, just as its impossible to predict how fast his AD will progress (which is what will make the aggression pass off. About 50% of AD patients go through a phase with agitation, but outright physical aggression is not something that everyone goes through.

What meds has the doctor tried? Increasing the dose may help, but if it just in't working, try switching entirely to a different drug, or combination of drugs.  

What active forms of behaviour management have you tried? By that I mean, again, watching for what sets him off, and approaching the activity differently to remove as much stress as possible. Going to the grocery store may just be too much for him period, and you will have to accept he can't go there. My mother in law got to a stage where she just couldn't be taken out, since going outside would freak her out (not to mention how upset she'd get by it being dark or cold). Here are some ideas
http://depts.washington.edu/adrcweb/UnderstandingAD/BehavMang.shtml
http://geroweb.usc.edu/lacrc/CaregiverIssues/FactSheets/bms.htm

Have you bought a copy of 36 Hour Day by Mace and Rabin, published by Warner. It is full of good tips and ideas, and if you only have one book on Alzheimer's, its the one to buy. Its in soft cover so its not expensive.

I'm sorry you are going through this. I know how upsetting it is, and I wish I could tell you that in X months this will stop. As he continues to go downhill, this will go away, but that is bittersweet, as so much  you love about him will go along with the behaviors you don't want.

Have a talk with the doctor about alternative meds and try some behavioral approaches. The home would have the same set of challenges - you might even want to try weaning him off all the meds and starting over.

Mary G.