Normal human responses to the C0VID-19 pandemic, without any doubt, contest the construct known as the Behavioural and Psychological Symptoms of Dementia (BPSD).
Many ‘dementia experts’ also refer to this as challenging behaviours, responsive behaviours, or unmet needs.
I do not believe any of these terms are appropriate.
BPSD is an umbrella term applied to people living with dementia (PLWD) devised by the International Psychogeriatric Association (IPA) in the late 1990s.
The ‘symptons’ the ‘experts’ claim are due to dementia may be ‘neuropsychiatric,’ but the majority of them, as COVID-19 has proven, are NOT actually due to the pathology of dementia.
Labelling the normal human responses of the majority of PLWD as ‘symptoms of dementia’ has been an easier front-line management ‘tool’ for health care professionals and family members, but it’s shown to have been inherently harmful to PLWD. It triggers unpaid care partners, paid care workers, and health care professionals to misinterpret the actions or normal human responses of PLWD, which in turn causes those providing care to fail to look for the real reasons. It has been shown to have caused inappropriate use of antipsychotics and physical restraints that are counterproductive and largely ineffective, and often harmful (My Alzheimer’s Story).
In this blog, once again, I once again claim the COVID-19 pandemic has highlighted people withOUT dementia (PWOD’s) are experiencing similar ‘behaviours’, which I refer to as the behavioural and psychological symptoms of COVID-19.
Isolation, stigma, discrimination, and distancing (social and physical) are the daily realities of most people living with dementia, and the pandemic highlights the very same ‘symptoms’ proving without vasts amount of expensive research that it’s critical to move away from BPSD (or any derrivation of this harmful construct).
COVID-19 has proven that BPSD ‘symptoms‘, are not in fact, NOT symptoms of dementia, and the majority of changes in behaviours are normal human responses to what happens to you, or how people treat you, once you are diagnosed with dementia.
From the comparison below, it is very clear to see and understand that the impact of COVID-19 has caused many more ‘neuropsychoatric symptoms’, than dementia ever has… The following table highlights just a few of them…
Thanks Kate – this argument about BPSD is SO important. Almost all of the ‘reactions’ that are called ‘challenging behaviours’ are perfectly reasonable, rational, normal reactions to the very poor communication that most people living with dementia are subjected to. People can learn how to be aware of good communication, as well as how to adapt over the course of the dementia. You can not only avoid aggravating so many of these ‘unwanted’ behaviours as a care partner or family member, you can also learn how to calm/de-escalate anxiety and even severe aggression – and all without drugs. Sedation is unnecessary when good communication skills are so easy to learn – if people only bothered to do so. We must make most Australians aware of this. Keep up the rage Kate!
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Thanks for your feedback Gaynor, I appreciate it. Your quote, “good communication skills are so easy to learn – if people only bothered to do so.” needs to go viral! It is a global issue, definitely not just one in Australia.
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Thanks for your comments Gaynor, and of course, that it is possible to manage almost all ‘behaviours’ expressed by people with dementia without drugs, and with improved care, communication and so on, simply proves BPSD does not exist. The world of people without demntia, have been holding us to a higher account for far too long. Thanks for all that you do to help swing this truly harmful pendulum. xx
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What a clear parallel to draw, Kate. The Pandemic has indeed shown the best and the very worst of us – and yet people living with dementia are still denied basic human rights. There is much to do still! xxx
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Thanks Sarah, it is true for sure.
With diminishing cognition, and other disabilities caused by dementia (also a terminal illness), the system, the researchers, the advocacy organisatons, and the care providers, have held us – the people diagnosed with dementia – to a mch higher account than the rest of society.
They have also ensured our families do the same, by ignoring our normal human responses and instead, chemically and physically restraining us as they find them challenging.
WT…
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Hi Kate. Thanks for such a timely article.
Also re covid, would things like room confinement in nursing homes (over such long periods), potentially result in increased incapacity assessments (eg by in-house doctors)?
I mean, being capacity testing which in normal circumstances (without covid) would have deemed a nursing home resident “with capacity.” ??
Again, am so grateful for your article.
🙏
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Thanks Maria… take great care xx
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Thank you Maria, and a good question re capacity assessments, during times of COVID. I am sure an exploration on this topic is needed. Take care xx
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