I recently attended the wonderful Alzheimer’s Disease International 2015 conference in Perth, Western Australia, and have recovered from the long journey back to Rochester, New York. Kudos to our hosts at Alzheimer’s Australia Western Australia, to the superhuman efforts of Jason Burton, and the wonderful administration of the event by conference chair Jenny Rogers, AAWA CEO Rhonda Parker, the whole Alzheimer’s Australia organization and the ADI group, here and abroad. There were 1082 delegates from 49 countries on hand, with an amazing 120 attendees living with a diagnosis of dementia.
I will be writing a few posts looking back on the conference as time goes on, but here’s a good place to start:
“BPSD”: Behavioral and Psychological Symptoms of Dementia. My plenary and breakout sessions drew a number of comments, but there was little at ADI this year that raised more debate than the manner in which a few colleagues and myself challenged this concept.
Here is the premise: people living with various forms of dementia often exhibit certain signs of emotional upset, which may include anger, sadness, fear, frustration, or anxiety. These are now referred to with the BPSD label, and even classified and categorized, with prescribed approaches to various categories. Have any of you ever experienced these feelings? Maybe you too have dementia!
Australian Kate Swaffer (living with fronto-temporal dementia and advocating worldwide through the wonderful organization Dementia Alliance International), started things off on Day 1 by taking exception to this term, suggesting that her diagnosis had deprived her of the right to experience emotions as the rest of us do.
Then, in our Day 2 plenary, Daniella Greenwood of Arcare Australia grabbed the baton and ran with it. She shared a quote that described the experience of a man whose diagnosis had left him all but abandoned and ignored by those dearest to him. The quote described his anger, sense of loss, and frustration at his inability to affect his situation. She concluded by happily noting that nowhere in the description were the man’s feelings pathologized—that they were shown to be the same valid feelings any of us would display in such a situation. She then used this to challenge the BPSD paradigm.
Helga Rohra followed, describing her experience living with Lewy body dementia in Germany. Her impassioned speech declared, “I am not a victim. I am a victor.”
So when my turn came, I gladly ran the anchor leg of the relay. I described how my experience in challenging our approach and listening to the words of the “true experts” taught me that people living with dementia get upset primarily for the same reasons anyone else does. The dementia component, when there is one, relates more to challenges to one’s communication and coping skills; but it’s not the root cause.
Blaming one’s upset on the brain changes is a barrier to our critical thinking skills, as it blinds us to the physical, operational, and relational attributes of the environment and the effects they may have, and is a slippery slope to antipsychotic drug use. I suggested that the audience look to their left or right and imagine that in order to return to the conference tomorrow, they had to have that person come to their hotel room and bathe them. “How would you feel about that? Would that upset you? Do you have a BPSD?”
(In earlier conversations with close friends, I shared my observation that “I think BPSD is the gateway drug to antipsychotic abuse.”)
I also mentioned that the remarkable success that I and others have had in reducing or eliminating antipsychotics is predicated on not accepting that “it’s the disease speaking,” but rather looking deeper and meeting those needs around various aspects of well-being. Success with this approach refutes the idea that the person’s irreversible structural or chemical changes were the cause.
Needless to say, I heard of several discussions and debates afterward. Many praised our words, but some took great exception to them. There are people who not only wholly subscribe to this paradigm, but also work to classify the various types of BPSD, suggesting clinical pathways to respond to each. I wonder: if I came to your house and observed your family for a couple of weeks and categorized all of the emotional expressions I found among you, would that not feel a bit weird?
Bear with me for a moment: In a book containing a postmodern critique of music theory and structural analysis, Fred Maus stated that our methods of categorizing and classifying music represent both a mirroring of our own perspective and biases, as well as an attempt to exert control over the subject matter.
At last year’s Eden Alternative International Conference, Dr. Jennifer Carson and I held a seminar that echoed this thought, challenging people to think of how our apparently compassionate approaches to care might actually represent power dynamics, bias, and control. In the context of BPSD, categorizing gives us a sense of control over that which we do not fully understand, and often reflects our own views, rather than looking for whatever else one’s expressions may represent.
For my part, as I mentioned in the plenary, I have moved to dropping the word “behavior” completely. Why? The word in its pure form does not describe a positive or negative action. But have you ever in your life heard the word used in conjunction with a person living with dementia, and used in anything but a pejorative way? Me neither. So the word has to go. I like the term “personal expressions,” but often just say “people’s words or actions,” or simply describe what I see or hear in a neutral way.
I heard about a few adamant objections after the talks—one directly to me, but mostly given to other speakers and colleagues—which I will describe as follows: Some were angry that their work was being questioned. They often displayed frustration and agitation about this point of view. There was a flavor of paranoia about the implications of our challenging this paradigm. One person’s response bordered on delusion—a persistent and unyielding belief in the reality of something, even when strong evidence to the contrary is presented.
These responses, to me, represent a classic case of BPSOD: Behavioral and Psychological Symptoms of the Over-medicalization of Dementia.
How does that feel?