We need to Ban BPSD before it’s too late…

/ January 13, 2019

The following article which is about a 5 year research project is truly terrifying, and only confirms my committment towards the need to Rethink Dementia and ban BPSD. It is thanks to Tina Minkowitz who is an attorney and psychiatric survivor in New York, and founded the Center for the Human Rights of Users and Survivors of Psychiatry, that I have seen it. Like those with mental illness who are forced to have ECT or forced chemical treatments, I find this abhorrent.

In the article, Pine Rest to receive $1.3M for participation in National Institute on Aging study, it says:

Pine Rest Christian Mental Health Services will receive $1.3 million for its participation in a five-year study sponsored by the National Institute on Aging which will look at the use of electroconvulsive therapy, or ECT, to treat severe agitation and aggression in people with Alzheimer’s disease.

Instead of reviewing current dementia care practice, this study has been approved to ‘fry the brains’ of people with dementia; in reality, it is being done without their informed consent. In my opinion, no one has the right to consent to ECT for another person, in my opinion, regardless of if they have legal power of guardianship. Surely this is killing people, and worsening their cognitive capacity, and should not be allowed. In this article, Adverse effects of Electro convulsive therapy, even though is claims ECT is useful for people with mental illness (which I personally would dispute) it states:

ECT has also been associated with a variety of transient impairments in cognitive performance during and following the treatment. The side effects, often subjectively reported by the patients, include deficits in orientation, short term memory function, attention, speech fluency, and executive functions lasting from hours to perhaps months in a number of cases.

I felt physically SICK reading about it.

Come on Warriors, we need to group together again, to get this campaign back on track.

ECT is surely just another form of RESTRAINT?????

The increasing numbers  of others who agree include academics, dementia professionals, people with dementia and even a few care partners who have been positive about, or even joined this ‘campaign’.

This list of Rethinking Dementia warriors started with Dr Al Power, Daniela Greenwood, Susan Macaulay, Howard Gordon, Liz Lester, Leah Bisiani, Sonya Barsness, and now, many others have shown support, including people such as Denise Edwards. The list has grown considerably since September 1, 2018, and when I can find it (1), I will add the others here as well.

Ps. If you advised us you wanted to be part of this group, feel free to let me know here again, as my filing system has moved into the more advanced stages of dementia.

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46 thoughts on “We need to Ban BPSD before it’s too late…”

  1. Hi Kate, I suspect I’m on the list but if not please get me on there! Maybe we need a get together, physically or virtually to develop a strategy that pulls all the pieces together?

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    • I’m not sure if you err or not Jason, but you’re on it now! I think virtual will be necessary, as there are quite a few people overseas on the list now, as there were when 6 of us campaigned last September. Talk soon xx

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  2. Dear Kate, I’ve been following your blog since doing the Wicking , dementia course. You have my admiration and respect for promoting positivity and wellness and that dementia is not a sentence or stereo type, but a diagnosis. You are a great activist and role model for all people and carers with and without the diagnosis of dementia. Please include me on this list.

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  3. I am speechless and horrified. Please add me to your list Kate. If there’s anything I can do, please let me know. (P.s. You may use the email address I am using for this comment).

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  4. Dear Kate, please definitely add me to this meaningful campaign and I am doing the advocacy in Hong Kong as well. With the connection with Sonya, I think that the Chinese term of “BPSD” should also be banned and I will follow-up as always. Please take my name “Kenny Chui” from Hong Kong and thanks a lot~~~~

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  5. Beautiful Kate – thank you so much for staying on top of all of this for us. I have already indicated my desire to be part of this group. May your agency, energy and love grow ever stronger!

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  7. It’s a shame we have ‘survivors of psychiatry,’ a field that is supposed to help people has become an agent of pain and suffering

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  8. This sickens me as well! What a pre-historic way to treat anything! My grandmother was manic/depressive and in her had it was a popular treatment. Didn’t help much except reduce her to being barely able to interact with others and her environment. She was safe, yes, and quiet, yes, but the results were not worth it! I label it cruel and inhumane!!!

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  21. OMG this is outrageous I wonder if Dr. Eric Achtyes has given any thought to using some of these funds to investigate the cause of these people’s aggression and agitation? Instead of treating the results, get too the root cause and address that 🤔 to work towards a more engaged quality of life. Please add my details to the list Kate and send any details of how to prevent any such trials here in Australia x ness

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