In today’s blog post, I am highlighting a piece written by Sonya Barsness, The Faces of BPSD published recently. Sonya is a gerontologist, and it says on her blog; “I am a bit of a rebel – I like to challenge thinking – and revisionist is a term that seems to capture this.
A revisionist is “an advocate of revision; a reviser; any advocate of doctrines, theories, or practices that depart from established authority or doctrine.” Revisionist historians re-interpret historical records or events. As a revisionist gerontologist I believe we need to change the paradigm of aging and dementia.” Hmmm, perhaps we are related??!!
Early into reading Sonya’s blog she says; “Thinking differently about dementia includes the need to rethink how we currently frame the expressions of people living with dementia through a primarily medical/clinical lens by labeling them as BPSD. It is important to note that, by definition, a symptom is a sign of abnormality. So, when we use the term BPSD we are immediately labeling the way a person is acting as abnormal, and thus problematic.”
This sums up well why I believe we need to #BanBPSD, and it is not suggesting for one moment we need to ban antipsychotics, sedatives or antidepressants, or indeed, any medication, but ONLY when prescribed appropriately.
Although there is a lot to read in Sonya’s excellent article, my focus in this blog is on the term Sundowning.
‘Sundowning’ it is yet another ‘label’ which has simply medicalised normal responses to fatigue. (Kate Swaffer 2018)
Having labeled normal human responses as symptoms of dementia, has caused harm, and too often, poor care. It has caused people to use medication and other forms of restraint as the first option, when for example, someone with dementia tries to ‘escape’ from a place of segregation (also known as secure dementia units!), or when a person ‘screams or yells out all day long’ due to being lonely and unheard, or in the case of sundowning, when a person is simply exhausted from working hard to do things as simple as getting dressed, finding their way, or understanding a conversation. These are things that those without dementia do automatically, and without the effort needed, as if it is a final university exam.
These are not symptoms of dementia, in any way, shape or form.
I’ve always believed the term ‘Sundowning’ to be incredibly misleading, and feel it has also caused harm, although probably have not explained well enough why. I did once write a poem about it titled “Sundowning or boredom”. I’m sure it is much more than boredom, and for most I know living with dementia, it is due to the incredible fatigue caused by the extreme ‘paddling‘ most people have to do, simply to maintain some sort of ‘normal’ life.
Sonya articulates it with this brilliant example;
“We are coming back from Tallahassee, where “Hal”, a person living with dementia, his wife “June”, my colleague Peggy, and I had met with elected officials to create awareness of the experience of dementia and the need for funds and support. As we sit down to dinner in a crowded, noisy restaurant, Hal is visibly upset and frustrated as he attempts to read the menu. He rather crossly tells June to order for him. Peggy gently remarks that it was a long day and asks if he is tired. Hal acknowledges he is and shares that he often feels this way at the end of the day. In fact, he says, he is so tired at the end of the day that sometimes he is angry. He says he literally sees red. He yells at June sometimes during this time, and he feels terrible about it. But it feels like he is unraveling, after a long day of keeping it together.
Is this what we call “sundowning”? Or is this just a normal response to the extreme amount of energy it takes to focus and function when you are living with dementia?“
I believe she is SPOT ON, and it is obvious when you read her example, this is simply a normal human response, and is NOT due to the pathology of dementia; nor is it a ‘symptom’ of dementia or BPSD.
Let’s instead label it sunset, which is the time if day it is! I’ll leave you to ponder these thoughts, and do recommend you read Sonya’s blog in full here…
Al Power writes about it too, although for now, I can’t find any of his articles to add here (feel free to add them in comments, if you can!). However this article, “Rythmns of the Day, Evening Time” written by