Urgent Attention: Gabriella Rogers and 9News
This letter is in response to the entitled “New Drug to Treat Behavioural Issues in Dementia Patients”, publicised on Aug.18th 2018 at 6pm.
“This report misrepresents both the facts and the real-world experiences of people living with dementia.
The report positions all behaviour, moods and reactions within the frame of a dementia diagnosis and overlooks the fundamental individual right of all people to be able to express emotions as a result of unmet needs.
This serves to generate and perpetuate stereotypical attitudes, a situation that directly contributes to the well documented overuse of medications in response to the expression of human emotion and the reactions that people living with dementia may have in response to challenges, problems and feelings that are a part of everyday life for us all.
This serves to propagate stigma and negative perspectives towards people living with dementia.
Overall, the language used in the report in reference to people living with dementia contributes to the problems that are now widespread. We believe that the opportunity exists to promote better understanding and an increased awareness of non-pharmacological strategies that can be used to help we would be very pleased to provide input that allows a more balanced approach to the reporting of this potentially emotive issue.
We believe that by rethinking dementia we are promoting a more enabling approach to change societal attitudes towards dementia and cease boxing people for the sake of expediency, given it is clear these invalidating and caustic typecasts do not reflect the actuality.
We would appreciate the opportunity to offer an alternate and more compassionate view to the one you have provided in your report and we offer access to international experts and activists who would be happy to be interviewed.
Please see (below) our recently published Letter to the Editor, published in the AJDC, (Australian Journal of Dementia Care, August/September 2018, Vol 7 No 4), outlining our philosophy and ethos.
Zero tolerance.
#BanBPSD.
Kind regards,
Leah Bisiani, MHlthSc, Dip Bus, dementia and aged care consultant, RN.1
Kate Swaffer, human rights activist, author, MSc dementia care, PhD candidate
Daniella Greenwood, consultant, author, speaker, activist
Dr Chris Alderman, B Pharm, PhD, FSHP, BCPP, CGP
Dr Al Power, Geriatrician, author, educator
Susan Macaulay, care partner, author, dementia advocate”
If you wish to discuss this with one of the authors, send us an email, specifying which author you would like to contact. I will pass on your request to the requested author. It is also pleasing to know others are joining the party in their own ways, by Challenging tradition: unlocking the DSU, also published in the same issue of the AJDC as the letter below. If we all take small actions together, ultimately we will stop restraining (physically or chemically) those needing assisted care, and stop restratining AND segregating people with dementia.
Pingback: World Alzheimer’s Day – Open Letter to Gabriella Rogers and Channel 9 – When The Fog Lifts
Pingback: The Campaign to Ban BPSD – When The Fog Lifts
Pingback: Bank Holiday Musings – When The Fog Lifts
Pingback: Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It – When The Fog Lifts
Pingback: 10 seldom-mentioned “side effects” of using antipsychotics in long-term dementia care, which are also 10 more good reasons we should #BanBPSD
You ROCK Kate Swaffer keep up the great fantastic hard exhausting rewarding challenging emotional frustrating l one step forward 2 steps back prob more! work that you do day in day out,
and then some! To making changes and trying to make others listen to those who actually know how a person with Dementia actually feels and what is best for them. A start would be by speaking and listening to those who have it!
Much love Annette 😘 x
LikeLiked by 2 people
Thanks Annette xxxx
LikeLiked by 1 person
It is a shame that people actually, ignorantly believe it’s a good thing having “developed a drug that’s only side effect is Prescribed Disengagement”.
A few of “the never publicized side effects” are:
1. Eliminates the need to properly train staff on person centered care. (Helps keep wages down and profits up)
2. Opportunity to further reduce patient/employee ratios. (Increased profits)
3. Reduced patient lifespan due to inactivity. (Who cares. There are plenty on their waiting list to fill the bed)
This is Prescribed Disengagement and Prescribed increased profits for Pharmaceutical Companies & Care Homes.
These drugs do nothing for “Patients Quality of Life”.
This really pisses me off Kate. Thank you for shining a light on injustice!
LikeLiked by 2 people
You are so right Jerry! It is exactly what we were talkig about at the DAI Webinar today, in a different context, but same story really. Thank you for joining the party Jerry, it is a privilege to walk beside you xxxxx
LikeLiked by 1 person
Jerry, I liked your comment so much that I created a blog post from it:
http://myalzheimersstory.com/2018/08/23/10-seldom-mentioned-side-effects-of-using-antipsychotics-in-long-term-dementia-care-which-are-also-10-more-good-reasons-we-should-banbpsd/
Cheers 🙂
LikeLiked by 1 person
Yay! He’s definitely learning more each day why we do what we do! Jerry of course knows we’re all a bit crazy, but then, that’s half the fun!!! #HumanRights4All #BanBPSD
LikeLiked by 1 person
Ooops. Looks like I repeated myself. I thought the first comment didn’t post as it wasn’t coming up on my screen, so reposted another one. Then they both came up. Duh!
You can remove one if you like GF!! What a nutter I am.
Still, maybe the words needs to be repeated for people to take note. Haha.
L. Xx
LikeLike
Proud to be working beside you as a #BanBPSD warrior Kate. We will not give up this fight until the world hears our voice – the voice of logic, the voice of reason, the voice of compassion. Humanity must learn to support one another throughout life despite our many differences.
We are challenging the stigmatising and negative behavioural paradigm used to unfairly judge and pigeon hole people living with dementia, and are advocating zero tolerate towards the
subjective assumptions made about dementia, behaviour including the misuse of medication, over medicating and chemical restraint of people who live with dementia.
#BanBPSD!!
LikeLiked by 1 person
Let’s repeat them!!! The more spaced repitition people get, the sooner they will learn the message.
ps I love you too xxxxxx
LikeLiked by 1 person
Lol. Then I shall just repeating myself until it gets through.
Boom!! Love ya. Xx
LikeLike
🤣🤣🤣❣️❣️❣️
LikeLike
Fantastic to see that we are making our mark Kate – we will fight this battle for as long as it takes for the world to listen to our voice – the voice of logic, the voice of reason and the voice of compassion. We need humanity to step up and support one another throughout life regardless of our differences.
I am so very proud to be working beside you on this, as a colleague, but also know that your friendship means the world to me.
You inspire me constantly, and your courage makes me want to do better every day.
Love you forever. xx
#BanBPSD!!!!!!!!!!!!!!!
We rock!
LikeLike
Absolutely Leah… TOGETHER, WE ARE SO MUCH STRONGER.
There are a few more people online wanting to join this particular party too! Woo hoo!
#BanBPSD #HumanRights4All #UHC #LivingBeyondDementia
LikeLiked by 1 person
Power in numbers GF.
Hope they are up for the roller coaster.
#BanBPSD #HumanRights4All
Onwards and upwards darling. Xz
LikeLike
Indeed, especially when we are all singing from the same hymn sheet! X
LikeLike
Great letter Kate and co good on you. Hoping to hear of the response with the hope it leads to articles with the focus on the person living with dementia and education and better understanding. Cheers Ness
LikeLiked by 1 person
Thanks Ness, we have had NO response yet, and don’t really expect to! See you very soon, can’t wait to see you old boilers! xx
LikeLiked by 1 person