The term “behavioural and psychological symptoms of dementia” (BPSD) is a harmful artificial construct used to inappropriately describe reasonable responses to adverse conditions and circumstances (RRACC) when such responses are expressed by people living with dementia (PLWD).
Some of the damaging and stigmatizing labels and descriptors associated with BPSD are “wandering,” “exit-seeking behaviour,” “challenging behaviours,” “combative,” “aggressive,” etc.
The term BPSD was coined in the late 1990s by the International Psychogeriatric Association (IPA). Twenty years on, a growing number of dementia care advocates worldwide are calling for the BPSD construct to be rejected by the geriatric healthcare professionals and researcher and to be banned from dementia care language (#BanBPSD). Prominent among those calling for the paradigm shift are dementia care pioneers Kate Swaffer, former nurse and care partner, speaker, blogger, activist, and author of What the Hell Happened to My Brain?, and Dr. Allen Power, geriatrician, speaker, author, trainer, consultant.
Dr. Power, whose books Dementia Beyond Drugs and Dementia Beyond Disease, are essential reading for geriatric health professionals, care workers and care partners, summarizes the problems with BPSD like this:
1 ) Relegates people’s expressions to brain disease
2 ) Ignores relational, environmental, historical factors and causes
3 ) Pathologizes normal expressions
4 ) Uses flawed systems of categorization
5 ) Creates a slippery slope to drug use
6 ) Fails to explain how drug use has been successfully eliminated in many nursing homes
7 ) Misapplies psychiatric labels, such as psychosis, delusions and hallucinations
Essentially, the broken lens of BPSD stops us from seeing the real causes of the reasonable reactions to adverse conditions and circumstances (RRACC) when expressed by PLWD, and thus impedes dementia care practitioners and researchers from finding and employing effective, enabling and engaging solutions to the distress experienced by many PLWD.
#IAmChallengingBehaviour #BanBPSD #WeCanCareBetter
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My Alzheimer's Story 
I take care of my husband with Alzheimers. He does wander. In the middle of the night. He is agitated. I love him and feel his pain but I have to sleep sometime. Agitation is a very difficult behavior. I always feel in your newsletters like you are blaming caregivers. If you don’t like institutional caregiving why don’t you care for your loved one at home like I do. Sorry to be so blunt, but you might be a bit more even handed.
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Thanks for your comment Janet,
I’m sorry that you feel I’m blaming care partners, as you also mentioned in a comment on this post: https://myalzheimersstory.com/2017/10/19/20-caregivers-answer-the-antipsychotic-question/
My response now is the same as it was then:
“I am the daughter of a mother who lived with dementia, and who was frequently up at a night. She was prescribed antipsychotics in small doses to help her and I both sleep. So I completely understand why some primary care partners turn to drugs in desperation. I know, because I’ve been in the same position.
However, had I known then what I know now, I would have approached the issue differently. That said, the small dose she was on when I cared for her myself was not really problematic. What was problematic was the fact that when she was placed in a LTCF the doses were increased to the point where she was catatonic for four to five hours a day, and she began to fall and become injured as a result.”
Regarding wandering I would add this:
https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/
Regarding been up at night, I offer this:
https://myalzheimersstory.com/2018/02/02/20-questions-to-ask-when-a-care-partner-or-resident-walks-around-at-night/
Regarding agitation, I have written extensively on the subject including here:
https://myalzheimersstory.com/2018/01/17/15-helpful-hints-to-prevent-agitation-in-people-living-with-alzheimer-disease-and-related-dementias/
https://myalzheimersstory.com/2015/04/19/20-questions-that-help-explain-why-people-with-dementia-get-agitated-and-physically-aggressive/
I did take care of my mother at home, and would have continued to do so with support had I been the one in legal control of her care. Unfortunately, I was not, and so she was relocated to a Dementia Jail, where I visited her every day for several hours each day for four years and where I saw her and others neglected and abused on a daily basis.
Once again, I’m sorry you feel blamed; it’s not my intention to blame you, myself or other caregivers. That said, it is my goal to point out that there are different and better ways to engage people with dementia, and to reduce the likelihood that PLWD will be given debilitating and dangerous antipsychotics and other psychotropic medications.
Susan
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