The REAL Reason Agitation is a Problem in Dementia

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.

About John Sloan

John Sloan is a senior academic physician in the Department of Family Practice at the University of British Columbia, and has spent most of his 40 years' practice caring for the frail elderly in Vancouver. He is the author of "A Bitter Pill: How the Medical System is Failing the Elderly", published in 2009 by Greystone Books. His innovative primary care practice for the frail elderly has been adopted by Vancouver Coastal Health and is expanding. Dr. Sloan lectures throughout North America on care of the elderly.
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5 Responses to The REAL Reason Agitation is a Problem in Dementia

  1. M. Rille says:

    Beautiful. Thank you. I am in the midst of trying to find solutions for my mother, in a care home, with heaps of medications. Dr. Sloan inspires me, the other folks’ comments encourage me, and I know in my heart of heart the right and wrong of the situation – basically, my mother needs more compassion and understanding, and less “being zonked out” to give someone the impression of easier care by staff. I am a geriatric social worker, used to helping folks with dementia to live at home as long as possible – and in line for my own caregiving needs, as we have knowledge of a neurodegenerative disease in our genes. God help us to maintain dignity and respect for humanity. Every ONE has to be accountable and take responsibility for their day-to-day actions. And then apply the same to the group, small or large.

  2. Lila McCormack says:

    I bought your book and greatly admired it and your approach to treating the needs of elderly people. Your respect for elderly people stands out as a beacon in an era when “age” is a dirty word or the butt of jokes, especially in the world of health care providers (nursing homes, bureaucrats).

    However, I wish you would have mentioned the possibility that agitation, delusions, cognitive impairment, memory loss and a host of other unwanted results can arise from taking prescription drugs, and that these side effects are not necessarily permanent.

    I’m not just talking about antipsychotic drugs, but any drugs. There are drugs commonly prescribed to adults for various chronic conditions that also have these potential side effects, so anyone, not just the elderly, can be affected. Often doctors dismiss the risk of these potential side effects as “rare”, when in fact they have no data to back up their “anecdotal” claims. As I’m sure you know, even the manufacturers readily admit these side effects, but one has to do a little work themselves by searching online for reputable drug reference information to get the full list of possible side effects, as what comes with one’s prescription is often a pared-down list of only some side effects.

    Here’s an example of what I’m talking about:

    A 60-something man who went in to a Victoria hospital (Royal Jubilee Hospital) for a simple day procedure about a year ago reacted to the anesthetic by becoming delusional. The hospital staff, immediately put him on antipsychotic drugs, which caused him to further decline, and with two weeks, the “social worker” was about to make arrangements to have him declared incapable and sent to an institution. The only thing that saved him was a friend who was an RN, and she intervened (with difficulty and carefully because of the hospital staff’s/doctor’s arrogance and indifference) with hospital staff to get him off the drugs.

    In two weeks, the man was fine and back at home.

    Had the medical “professionals” at this hospital prevailed, this man would have become another “dementia” patient in a nursing home, paid for by our tax dollars.

    I could also talk about several instances of which I am personally aware of nursing home staff abusing elderly people in ways people would hardly believe, and then drugging these elderly people so as to render them incapable of reporting the abuse, or to impair them so that they are not believed. Many people I’ve spoken to about this have their own horror stories of abuse by doctors, nurses and other so-called “care providers” in these horrid places, and it’s not just private care homes either. In fact the worst ones I know of are run by non-profit societies and health authorities themselves. These places will be our society’s legacy of shame for decades to come.

    The BC health system is rotten from the front lines to the top, you being one of few exceptions.

    • John Sloan says:

      You’re perfectly right, and thanks for the re-emphasis. “delirium due to infection or medication” was I guess my way of including drugs as a reversible cause of agitation. The topic probably deserved at least a paragraph, but when I’m on a rant I don’t want anything to slow me down! In this case on my way to the real villains of the piece: people not doing their jobs properly. Absolutely that includes irresponsible prescribers who are blind to the harm their poisons may be doing.

    • Thanks to this reader for sharing the insights. Can only say Amen. Be aware that most 3rd-party-run ‘care systems’ are rife with intentional or unintentional abuse of the frail elderly in care. Know that by aquiescing to this type of system you are tacitly agreeing to abuse of your loved one for the sake of perceived ‘conveniences’ on all sides.
      If you don’t like that option, be prepared to launch yourself on the adventure of a lifetime to offer your frail edlerly a meaninful, dignified, alternative you can be part of. It could be the making of you as a human being.

      Also, be aware of what drugs your frail elderly are given when, and track the behaviour in the hours before and afterwards. I know, for instance, that had my elderly mother not advocated tirelessly – using a nonthreatening but insistently inquisitive, scientific approach, i.e. ‘But WHY does he only fall at this time of day from dizziness?’ – she led their family doc into the realization (with my help: I asked WHY he was on a heart regulator drug still, when he had a pacemaker? – these are neophytes’ questions, remember!) that my father was on meds he didn’t need. And had been for a long time. Turns out THOSE were what had caused him to fall numerous times, his head often taking the bleeding brunt of the falls, with ambulance attendants needed to help get him up again.

      Whether we are friends or family, WE know our frail elderly best: we are more alert to their historical selves, more alert to their behaviour routines. We need to stay connected and aware when we’re with them. Then we can advocate intelligently, with observations to back us up, when the need comes – and it will very definitely come.

  3. Judith Hunt says:

    Thank you for again explaining how complex it is to help a person with dementia. And how much patience and re-evaluation can be required. That goes against the grain of today’s western society: the myth that expensive electronic tests and silver bullet drugs are all that is needed for any health condition. As health care costs are now unfashionably high there will be more and more pressure to use dirty drugs to warehouse a demented person cheaply. Or, God help us, euthanasia.
    We owe it to ourselves, if we desire to stay human, to find ways to offer the kind of care you describe.

    P.S. I admire your impassioned writing style.

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