Advocacy, Antipsychotic drugs, Toward better care

alzheimer disease didn’t do this. drugs and dementia jail did

I’ve blogged a lot about the negative impacts of the inappropriate use of quetiapine (Seroquel) and risperidone (Risperdal) on people living with dementia, specifically on my mom.  One post, for example, shows the immediate effects of such drugs on my mother, another shows the difference from one day to the next when she was drugged and when she was not. I’ve also blogged about the side effects of quetiapine (Seroquel), of risperidone (Risperdal), and of haloperidol (Haldol).

I shared videos about the tardive dyskinesia Mom suffered as a result of the long-term inappropriate prescription of the antipsychotics she received.  I’ve talked about how the Government of Quebec finally acknowledged what I knew to be the truth about antipsychotic drugs seemingly long before they did, and how the action the government took in 2017 was too late for my mom, but hopefully not too late for others. I expanded on that with another video showing the effects these drugs had on my Mom.

Now I offer this:

I share this video because it demonstrates in a concrete, compact, and comparative way some of the physical and psychological effects the inappropriate prescription of antipsychotics had on my mother over a period of three years. This isn’t the end of our story. There’s much more proof to come.

I’m compelled to share our experience so the people you love, and you don’t suffer as Mom and I did. I also want to make it known to care providers, governments and our society overall that it is our collective obligation to provide people who live with dementia and older adults the care they deserve. It’s a human rights issue.

I hope people of the future look back with incredulity at where we are today and say “We can’t believe they did things that way.”

#wecancarebetter

https://myalzheimersstory.com/2017/06/10/drugs-not-dementia-robbed-me-of-my-mom-and-her-of-her-mind/

https://myalzheimersstory.com/2019/06/07/just-like-one-flew-over-the-cuckoos-nest/

https://myalzheimersstory.com/2017/12/03/four-years-later-is-too-late-for-my-mom-but-its-not-for-others/

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Care Partnering, Challenges & Solutions, Tips, tools & skills

never never argue is the “N” in BANGS

Like many dementia care partners, I spent years arguing with my mother and exacerbating no-win situations before I became aware that debate only created more anger and angst. By arguing, I became the cause of her “bad behaviour.” It wasn’t the disease, it was me; it wasn’t her fault, it was mine. Had I put myself in her shoes, I would have saved us both a lot of aggravation.

BANGS is an acronym for five ways anyone can use to avert and defuse conflict with people who live with Alzheimer’s dementia and other kinds of dementias.

“B” is for breathe.

“A” is for assess, accept, and agree.

“N” is for never, never argue

“G” is for go with their flow, let go of your ego, get over it, get on with it, get down to it

“S” if for say you’re sorry

This post is about never, never arguing. Arguing with someone with dementia gets you nowhere. It just adds to everyone’s frustration and creates an environment where more conflict is likely to occur. Imagine this conversation at a family dinner:

“His hair was jet black when he was little,” the person with dementia (PWD) says about his grandson.

“No, it’s always been brown,” the boy’s mother counters.

“No it wasn’t. It was black,” the grandfather with dementia shoots back.

“I’m his mother, I should know,” the boy’s mother’s voice  rises an octave or two.

A heated row ensues over the colour of the boy’s hair, which has always definitely been brown, not black. But who cares? The argument could have been averted had the daughter simply agreed with her father about the colour of her son’s hair.

This tendency to argue is not confined to “natural” care partners. Many paid care workers in institutions such as long-term care facilities, nursing homes, and hospitals are unaware they create problems by the way they talk to and treat people with dementia. Imagine this scenario:

“That’s not yours honey,” the caregiver says as she tried to pull a small object from an old woman’s grasp.

“It is so. It’s mine!”

“No it’s not!”

“Yes, it is!”

“Give it to me. NOW.”

“NO.”

 The old woman with dementia slaps the caregiver on the arm as the caregiver yanks the object away.

If you think it sounds like kindergarten gone bad, you’re right!  That’s just what it’s like, and situations like these are why many people with dementia get branded “aggressive” and “violent,” and why far too many are given harmful and largely ineffective anti-psychotic drugs.

We have the power and the responsibility to change these responsive behaviours by changing how we behave ourselves.

The minute  care partners stop arguing with their loved ones and others they interact with who have dementia, things greatly improve. I know it from personal experience and there’s stacks of research to prove it.

Dementia communication is perhaps the only place where that old cliché about “never say never” never applies!

 

Don’t want to end up in a “shoot-out” with a PWD? Use BANGS. The full 50-minute webinar is here:

https://myalzheimersstory.com/2016/12/08/5-surefire-ways-to-stop-anger-and-aggression-in-people-who-live-with-alzheimers-disease-in-the-mid-and-later-stages/

See also: Teepa Snow demos 10 ways to calm a crisis with a person with dementia

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Take my short survey on behaviour here.