Rethinking Dementia: Normal Human Responses #4

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

Reminder to check out DAI’s #WAM2018 daily #Hello my name is blog series with personal stories (written or video) by members of Dementia Alliance International from all around the world.

17 thoughts on “Rethinking Dementia: Normal Human Responses #4

  1. Wow what an amazing article by Sonya so much to digest thanks for sending it on Kate😘 For me I can work on seeing mum and people living with dementia as us and not see them as “other”. To see things from mums perspective rather than my perspective. So much to take out of this article, let’s keep plugging away my friend remember those who fly highest see fatherest x ness

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  2. Hi Kate. My name is Kenny Chui from Hong Kong and I have tried to email you since last month. However, I am not sure that your email in “uow.edu.au” is stilling working. Great to hear what you have done in Taiwan recently and it was very vital to work on the rights of people living with dementia in Asian countries. Please email back to me if you are time available as I am also promoting not using the term “BPSD” in Hong Kong during my teaching and consultation to the organizations. It will be my great honor if I could join the #BanBPSD campaign and the member of DAI. Thanks for your reading and I wish that I could reach you here ~~~~~Thanks a lot and keep in touch~~~~~

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    • Thanks Kenny, and apologies I’ve not had time to reply to both of your emails. I promise to ASAP. Also, for your own privacy I removed your email from your comment to save you the pain of spammers! Look forward to hearing about your Ban BPSD campaign too, and also perhaps your offer on how you can support DAI. K

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  3. Forgot to say-what an amazing article Sonya wrote-well done Sonya! Good on her for sharing her personal experience and speaking out. Recently, i have started looking at potential rest homes for my Grandad if he ever has to be moved into care which is quite likely as my Grandma is contiunally bullying him and i have been looking at all the rest homes i can find in Auckland and been trying to find lots of negative information about rest homes so i know not to put him in those homes-i have found quite a alot of negative information about homes, but quite a few there is nothing negative about which is a good sign. If i ever saw anyone in the rest home treat someone like that-i would think about complaining. I plan to view a few rest homes in a few weeks and get my opinion on them. Hope the staff are nice at those homes!

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    • In my experience Sam, even the ones which look good can be terrible and the ones that might look like a dump can be great! The old saying, never judge a book by its cover’ is true for everything. If he does need to go into one, my heart tells me you will be a wonderful advocate for him to make it as positive as possible. X

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  4. Good on Sonia for raising awareness about dementia-i am inspired to do it too like her-from hearing this we definetly realise there are heaps of people out there who care. I am loving this blog series, Kate-keep it up and i am looking forward to many more blogs in this series!👍

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    • Thanks Sam, and I’m glad it’s helpful. The more of this series I publish it seems the more the #Dementia #Warriors come out to improve things. Maybe, with more of us collaborating and working together respectfully for the common goal of improving the lives of people with dementia and their families, the sooner things will change?! X

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