how would “normal” people feel if we did to them what we do to people who live with dementia?

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The more research I do, the more proof I have that the behaviours of some people who live with dementia that challenge those around them are not the result of dementia, but rather perfectly reasonable reactions to particular sets of circumstances.

In early 2017, I began an anonymous online “survey” that is both a learning tool, and a way for me to show that behaviours labelled “BPSD” are in fact normal human behaviours. You may take that survey here; you may see the results here, or in this article published in the Journal of the American medical Directors Association (JAMDA).

I started my second anonymous ongoing online survey on April 11, 2018. As I write this five days later, I’ve had 318 responses. Of those, 93% (297 respondents) answered an open-ended question which asked how they would feel when faced with a situation that every person who lives with dementia in a “memory care unit” and others in their own homes potentially face every day.

The question asks how respondents would feel if they could not leave their living space when they wanted to because they could either not find a door, or the door(s) would not open. Of the 297 people who have responded to the question so far, two (2) say they would remain calm; four (4) say they couldn’t imagine what they might feel.

The other 98% (291 respondents) say they would become distressed in some way. They describe how they would feel using words such as scared/frightened/afraid/terrified (25%); anxious/upset/agitated (24%); trapped/claustrophobic/imprisoned (22%); frustrated (20%); panicked/panicky/panic (18%); as well as others such as angry, confused, disoriented, helpless, cross, annoyed, and crazy. Many use multiple word answers; for example:

  • Trapped, a prisoner in my own home.
  • Confused, upset, suspicious, anxious, angry, frustrated, depressed, imprisoned.
  • I would be extremely upset, panicky, angry and disoriented.
  • Angry. Upset. Confused.
  • I would became frustrated, agitated, and probably angry.
  • Terrified! Confused! Helpless! Frustrated! Angry! Embarrassed! Desperate!
  • I would freak out. Total meltdown. Panic.

Of the 318 people who have participated in the survey to date, 282 (89%) say they do not have dementia. Therefore, their reaction to being “locked in” cannot be a result of dementia.

We’ve got it all wrong when we lock up people who live with dementia in their own homes or in memory care units, and then blame dementia for their anxiety and upset. As people who live with dementia are human, they react the same way the rest of us would if we were unable to leave our living space — they feel frightened, anxious, frustrated, trapped, panicky, angry, and confused. I experienced it first hand with my mom when I didn’t know any better.

It boggles my mind that an astonishing number of medical professionals in the area of dementia care seem not to “get it.” It’s not rocket science folks. We just need to walk a mile in their shoes.

Take the survey here.

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Take my second short survey on behaviour here.

2 Comments

  1. I’m with you Susan. They just need to ask themselves “What am I doing, or what is happening in the environment around them, that is causing this response? What are they FEELING right now, and how can I make it better?

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JM