20 compelling reasons to rethink the way we label and medicalise the behaviour of people who live with dementia #BanBPSD

In June this year, I posted an open letter to the worldwide dementia care community. Since then, advocates and activists such as myself, including Dr. Al Power, Daniela Greenwood, Howard Gordon, Liz Lester, Leah Bisiani, Sonya Barsness, Dr. Chris Alderman, Kate Swaffer, and others, have joined forces to create an awareness and action campaign calling for the ban of the damaging and stigmatizing artificial construct BPSD (the short form of “behavioural and psychological symptoms of dementia).

As part of the campaign, fellow human rights and dementia care advocate Kate Swaffer penned “Rethinking Dementia: Normal Human Responses,” an excellent post wherein she lists fourteen simple examples of why we should #BanBPSD. Here are five from Kate’s list of 14 [I’ve added bits here and there, which I have enclosed in square brackets]:

• Labeling and medicalising normal human responses to being segregated [and isolated] is wrong; it is also a breach of our most basic human right under the Convention on the Rights of Persons with Disabilities (CRPD).
• Labeling and medicalising normal human responses to being physically restrained is wrong [just as 96 per cent of people not living with dementia do not wish to be locked up], people living dementia do not want to be locked up either; locking us up is also a breach of our most basic human right under the CRPD.
• Labeling and medicalising normal human response to the need to walk is wrong; everyone needs and wants to walk! [Furthermore, “wandering” is not a symptom of dementia.]
• Labeling and medicalising normal human responses when someone is unable to communicate their needs or wants is wrong. [While people who live with dementia may have difficulty communicating, and others may have difficulty understanding them, it doesn’t mean people living with dementia are not communicating through their responses and reactions. Communication takes many forms, and not all of them are verbal.]
• Labeling and medicalising normal human responses to being forced to live in an institution is wrong; we know institutional care ensures poor care, and [given the] choice, almost no one wants to live in [an institution].

I would add these six to Kate’s list of 14:

15 ) Labeling, medicalising and punishing normal human responses to being told to sit or stay still for long periods of time is abuse. Most people (75 per cent) say they would start to feel restless if made to sit longer than half an hour.

16 ) Labeling, medicalising and punishing normal human human bodily functions is cruel and abusive.

17 ) Labeling, medicalising and punishing an individual’s lifelong normal behaviour is cruel and abusive.

18 ) Labeling, medicalising and punishing an individual’s normal human responses to inadequate care, harmful environmental conditions and being restrained is cruel, abusive and wrong.

19 ) Labeling, medicalising and punishing an individual’s normal human responses to cruel, abusive, harmful and wrongful treatment by physically restraining them is abuse.

20 ) Labeling, medicalising and punishing an invidivual’s normal human responses to cruel, abusive, harmful and wrongful treatment by chemically restraining them is abuse and should be made criminal.

I highly recommend reading the full text of Kate’s excellent piece here, and I invite to also read my article “the broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with alzheimer’s disease,” which was published in the Journal of the American Medical Directors Association.

#IAmChallengingBehaviour #BanBPSD #WeCanCareBetter

take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

7 problems with BPSD

the broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with alzheimer’s disease

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Take my short survey on behaviour here.

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