Further to the fuss in my last post over Global TV, here’s my loonie’s worth of opinion on what we in healthcare call “Agitation in Dementia” AKA PBSD (psychological and behavioural symptoms of dementia).
What would having severe dementia feel like? Well we understand that for demented people the ability to grasp what’s going on around you slowly dries up ’til it pretty well disappears. To speculate, it could feel like just having woken up out of a sound sleep and finding yourself in a strange place with strange people, and no understanding of how you got there or even who you are, all the time. Added to which the ability to express yourself also tends to go down the drain. Sounds like a recipe for a nightmare from which one doesn’t wake.
Many of us might even handle most of that just fine, but along with memory and language demented people often lose their emotional and judgment compasses. No surprise that some of them are fit to be tied and express their terror and bewilderment to the world. So they scream, hit and fight with people who approach and care for them, smash things, rummage around looking for whatever, and stay awake all night.
Now trying to help these people is not something mysterious that nobody knows anything about. It’s one of the difficult challenges in the health care business, so as you might expect there’s been plenty of research on it and lots written about it. If capable helpers who understand the usual process apply it conscientiously according to good prescribing principles and common sense, nearly all agitated demented people can be helped. Nearly all. Here’s what you’re supposed to do.
First, is the demented person unknown to you or is her “behavior” new or suddenly changed? If so, “round up the usual suspects”. Do a very careful search for agitation causes that can be fixed. Examples: delirium due to infection or medication, pain, treatable depression, mania, return of an old psychosis, being abused, symptoms or discomfort from an unrecognized health condition (urinary retention, diabetes out of control, excess thyroid hormone), the list is long but not endless. For a doctor, listening carefully to what everybody has to say, asking the right questions, doing a sensible physical examination, and getting whatever laboratory and x-ray tests might help would be part of this search.
Misunderstood by most everybody is the other necessary early step, which is temporary control of the behavior for general safety and peace of mind. One reason to do this is to prevent understandable but pointless expensive admission to hospital. And (I’m terribly sorry to say) it’s usually going to involve dirty old drugs. Temporarily! Typical doctor’s first mistake is to not demonstrate that the behaviour can be controlled while looking for its causes (because she’s afraid of using drugs, or the family refuses, or the nursing home has a “no antipsychotics” policy). Usually those poor people end up in the emergency room and topple into the acute care hospital meatgrinder, still screaming. Believe me, then they will get drugged!
No remediable causes? Next (and this is where the best and most experienced facility and psychiatric nurses work their magic) do everything you can to settle the person down. This is about love and comfort. Sometimes it takes weeks to find out what works. Again, I must apologize for talking about the real world, but if 24/7 companionship, back rubs every 15 minutes, daily supervised group programs, going for frequent walks, music therapy, a quiet private room, or having the kids visit daily works, it’s only useful if it’s available, longterm. And there is a play back and forth between trials of behavioral treatments like these and carefully reducing any drugs that were started. Otherwise, on to the next step.
Prepare yourselves: the next step is about medication. Remember, we may have started some drug back when the situation was intolerable to buy time to do the “remediable-causes” search. If this coincided with behaviour quieting down, we now have to look for side effects, and carefully creep the dose down to the tiniest amount of medicine that works. Maybe none at all. Or, we may be starting from scratch. So, what does this behavior feel like? Suspicious fear? Unhappy anger? Out-of-control crazy fun? Frightened of his shadow? Nearly all medications work for calming agitated demented people, but they can be targeted at the apparent psychological symptom. For the above list, reasonable first-tries might be antipsychotics, antidepressants, mood stabilizers, or minor tranquilizers respectively. Tiny doses, to start.
Typical doctor’s next mistake is to fail to return and carefully evaluate the consequence of the first prescription (I’ve got to wonder what kind of pharmacology training did those people get in medical school?). Hello: Better? Worse in some expected or unexpected way? Both at once? No consequence at all? Nobody knows? You prescribed the drug, so straighten it out. If side effects outweigh benefit or it doesn’t work, stop it and try something else. Typical doctor’s next mistake: “piling on”. The drug isn’t working, but caregivers insist it can’t be stopped, and frightened doctor goes along. Result: a dangerous interacting opaque stack of pills.
Over weeks, with patience and determination, we arrive at the best, simplest, safest effective medicine and dose. Any patient still in trouble after all of the above? We need help. And then begins or continues the tireless round of re-evaluation, trials of drug dose reduction, searches for remediable causes, family and care staff counseling and education….
Sound easy? It isn’t! And that’s why magpies like Global 15 x 9 get to make such a repeated loud attention-grabbing racket about the way this problem is mishandled. We (doctors, nurses, and (yes while we’re advocating for care shared with patients) family members) aren’t willing to do the exemplary difficult job required. Simple as that.