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

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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 PowerDaniela GreenwoodHoward GordonLiz LesterLeah BisianiSonya 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]:

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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2 Comments

  1. Susan, I wholeheartedly agree! I also believe that any worker in a facility who works with people living with dementia should be certified in dementia care and then carefully monitored by specially trained management. As you know, it is a stressful situation and having well trained and informed care givers as well as well trained management providing an environment of compassion and understanding would tremendously enhance the atmosphere. Care facilities need to abandon conformity to structured tasks and schedules and help the patients make their own decisions as long as they are not self harming or harmful to others.

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JM