Image Source: Kate Swaffer © 2015
Hopefully this blog makes even a little bit of sense, although as I read and edit it, I’m a bit concerned. Anyway, my goal is for you to consider the first list, as if it were you.
Ask yourself…
When you’re having a bad day, are struggling to do something, or things are going wrong, or if you live with an obvious disability:
- Is being pitied helpful?
- Do you need people to take over for you?
- Do you need others to talk for you?
- Do you need people to assume it’s difficult, and publicly tell the world explicitly what’s going wrong for you?
- Do you need others to assume you are suffering?
- Would it be helpful for others to then tell the world you are suffering, as if their experience of watching you have a difficult time is also yours?
- Would these responses be disempowering and further disabling?
- Would you feel a tad pissed off with any of the reactions above?
- And would you like your family or partner to Blab all over social media about your experiences?
If you experience any of the responses above, and you also support someone diagnosed with dementia, then please consider how they might feel when all of these things are done to them.
I’ve listed below just a few normal human responses (to the list above), which if you have dementia would be labelled as the Behavioural and Psychological Symptoms of Dementia (BPSD):
- Angry or anxious
- Annoyed
- Frustrated
- Shutting down, refusing to communicate (stubborn, rude, non compliant)
- Wanting to get away (absconding, wandering)
If you had any or all of the same responses… well, if you are a PWoD (Person Without Dementia), then that’s absolutely ok.
Don’t worry, you won’t be chemically or physically restrained, or labelled as if they are symptoms of a disease.
It’s only people WITH dementia (PwD) who are not yet allowed to have normal human responses like this, isn’t it?
It really is time to #BanBPSD
Thanks for the blog Kate, I am enjoying living on the South Coast of NSW but before we came here we were in a rural setting. I remember going to see a diabetes educator who looked at my file, looked at me and said you are too young to have dementia, then proceeded to talk to me slowly in a loud voice. Hmm, I am not deaf and at the time I did not have trouble understanding what was being said to me. people assume so many things or because their mother father /relative had dementia, they know all about it, how I feel and what I should be doing. So frustrating.
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Frustrating for sure… sending you lots of hugs 🤗
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Eloquent as always Kate! x
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Probably not eloquent… but it seems I made my point! Love to you xx
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Funnily enough, it seems that now I have to use a walking stick because of my balance issues, I have become an incompetent old woman, who needs to be told in which chair I should sit in a sickly humouring voice, whilst they grab at my arm. The frustration makes we wants to hit out or yell at them….clearly BPSD!!!!
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Oh no… that’s horrid! Perhaps that’s the second reason for a stick Bobby?’ Something to hit them with 🙄🤔😂 arrgggghhhhh
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Kate, You know I love you and your BLOGS, but I would suggest that if you are going to use ACRONYMS to please put what they mean when first used in each post. This is a copy of the comments I added to share this post on my Facebook page: This BLOG talks about how you or I (PWoD) (Person Without Dementia) might react to some negative situations and how if you are a PWD (Person with Dementia) the same actions are considered BPSD (Behavioral and Psychological Symptoms of Dementia.) We need to change our thinking about Dementia/ Alzheimer’s!
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Thanks dear Michael… I’ve updated all three acronyms now! I forgot to, as have used all before, but the PwD and PWoD not for a long time! Love you xx
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Thanks for updating. I believe the protocol is that whenever one uses an acronym, one should put the meaning in parenthesis the first time it is used in every piece if only because one never knows if people have seen other posts dealing with PwD or PwoD or BPSD. Just sayin’
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Hahahaha! I know you are right. I just felt like a day off! X
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That is the “school teacher’ in me 🙂
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I used to be like that too… now, a lot of the time I can remember the acronym, but not what it means. In this case however I was just being lazy! X
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Great blog Kate. Due to some speech delay at times or trouble word finding/speech flow, I now find people starting to become impatient with me and jump in, interrupt. Damn right it pissed me off, it happened just this morning. Someone normally there to be an enabler in a group (he’s normally good at his job) cut in and ended up disabling my communication. It was a meeting I thought I could offer some valuable contribution, yet felt I had to leave. We have to lick this and stop it happening to future generations of us “sufferers”. We should not be forced to suffer these tools any longer 😖
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Love you Julie… and I’m sorry it happens to you too. Sadly, it happens to all of us it seems. xxxxxx
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