Reporting from beautiful Lake Como…
A recent online Medscape post reported on a presentation given at the American Association for Geriatric Psychiatry that called into question recent government efforts to decrease antipsychotic use in people living with dementia. The researchers presented the results of an antipsychotic withdrawal trial in which twice as many people relapsed when switched to a placebo as those who remained on the antipsychotic. Based on these results the investigators strongly recommend re-examining current Federal guidelines for attempts at drug withdrawal.
To me, this represents a perfect example of how our biomedical/psychiatric view of dementia and its related distress has put serious limitations on our vision. An entire body of psychosocial literature has been ignored with this study, and an erroneous premise has led to an equally erroneous conclusion. How could a room full of physicians “thunderously applaud” the study’s recommendation, with no notice of the hole you could drive a truck through?
Let’s consider a few points:
1) Drugs were either withdrawn or not. It does not appear that anything else was done as an intervention. This reflects the flawed premise that the episodes of distress seen were merely caused by brain disease and that the pill is necessarily the answer.
Yet there is a world of literature tying behavioral distress to unmet needs and environmental triggers. Nothing was done to identify or satisfy these needs when the drugs were stopped. Of course people got worse!! They went from being sedated in a world where they could not find well-being to becoming alert with the same unmet needs.
2) This study contrasts with a body of literature (referenced in my book) showing that, with targeted interventions, the majority of people can have antipsychotics stopped without objective evidence of worsening distress.
3) The problem of “psychosis”: In contrast to the statement at the conference that “this study justifies why geriatric psychiatrists are so important”, the involvement of psychiatry in this manner can be a double-edged sword.
Dementia, in my opinion (and that of many others), is not a psychiatric illness. Leading researcher Jiska Cohen-Mansfield has gone so far as to state that “it is time to abandon use of the the term ‘psychosis’” when referring to the symptoms of dementia, because what we are seeing is a different process than that of schizophrenia. And in fact, misinterpretation of one’s environment by a person who processes information differently is not psychosis, but too often gets labeled that way. (See my concluding story below). So the application of psychiatric logic can totally misrepresent the experience of people living with dementia.
4) A third of the people left on antipsychotics had a relapse, and 40% of those taken off did not, yet the study was quick to discount other possible interpretations for the data. The presenter stated that he uses divalproex and risperidone regularly and “70% to 80% of my patients do well”, even though no study in history has ever suggested more than a very modest benefit, if any.
5) “Improvement” continues to be measured only by reduction in negative symptoms, rather than any improvement in positive aspects of well-being, which leaves the concept of sedation very much in the mix.
Once again, one need only look to Ecumen homes, who in Phase 1 of their “Awakenings” study, took all 10 people using antipsychotics for their dementia off of the drugs in one small nursing home. They also provided additional interventions, along with increased staff education and support.
Not only were there zero relapses after 6 months, the 10 individuals began showing cognitive capabilities that were thought to have been long lost, suggesting that there are subtle yet powerful effects on cognition going on with these drugs. Ecumen is now in the process of removing these meds at their other 17 homes.
So once again, we are stuck in what I call “The Pill Paradigm”. It’s not a question of the best pill; it’s a question of whether any pill will be the answer to a person whose changing experience of the world is not appreciated and complemented by the care environment.
On to the story:
I heard last fall of a gentleman in the Midwest who began getting very agitated when sitting in the lounge. Even when it seemed quiet and there was no interaction, he would suddenly start yelling, “Stop it! Stop it! Make it stop!”
Now our biomedical view of dementia, especially of the Lewy Body type, would lead us to the conclusion that this was some sort of hallucination or delusion. It occurred on and off, and with no obvious triggers.
But one staff member refused to go down that road. He sat quietly in the lounge near the man, centered himself, and made himself acutely aware of all that he could hear or feel in his surroundings. What neither he, nor anyone else, had noticed before was this: the window had been left slightly ajar. It was very windy that week, and every time the wind began to blow hard, there was a soft, but distinct high-pitched whistle coming through the crack in the window. And every time it happened, the man shouted.
The window was shut tight. The “psychosis” was cured. Please tell me: where do antipsychotics, our any drug, come into play in that scenario?