Tag Archives: A Meeting of The Minds

DAI in Chicago #3

Today, we bring you DAI’s Vice Chair Jerry Wylie’s recent Plenary speech from ADI Chicago. Sit down, grab a coffee and put on your seat belts. It is a fabulous, if not challenging ride, especially so for health care professionals and providers, so get yourself ready, relax, and tune in to watch it now here, or later on our YouTube Channel.

Living the U.S. National Dementia Plan

Presented by Jerry Wylie

This is not Jerry’s full speech notes, but a blog he wrote very recently, that goes well with it, and covers many of the key messages in his speech. He also presented his speech again at our monthly Webinar yesterday, so those who could not attend ij erson, could hear him live online.

“Living well with Dementia may well be, the best lived experience of my life now that I have recovered from being inhumanly treated”.

What? Inhumanely treated? How, when and why? Read on……

First, our diagnosis is delivered “Without Any Referrals” to support or disease education. No discussion of rehabilitation and No words of encouragement, No mention of hope, how diet & exercise could help. We are given absolutely nothing, zero, nada. To this day, we are still being told to get our affairs in order and, here are some drugs that might help with your symptoms, temporarily.

The end result; we are “delivered directly into suffering” from depression by the very doctors who are paid to keep us well.

Not long after this wonderful experience, most of us, are “abandoned by one or two members of our own family”.

Below, is a chart that shows exactly how  we process this situation. We no longer have the ability to properly process what happened and, because we need family more than ever, we are driven even deeper into “long term & unnecessary suffering”.

It took me 1.5 years of preventable, unnecessary suffering, to fight, scratch and claw my way out of the most miserable, vegetable like existence of my life.

“THIS IS NOT JUST MY STORY”!

It’s the story of 50 million other people living with Dementia as well. This treatment is our standard treatment world wide, perhaps, due solely to ignorance.

I can confidently say “The only time” a person with Dementia “really suffers” before end stage, is when we are either unintentionally or, intentionally mistreated. Period.

Clearly, this is cruel, unusual and unacceptable abuse. Clearly this is a violation of our human rights.

When someone is caught abusing a pet, it immediately becomes a huge media/news event and people get arrested. When 50 million people are abused by our doctors and sometimes by family members, nothing is reported and no one is as much as reprimanded.

When harsh words are spoken to us, we can’t process what you said but, we “cannot forget” how you made us feel. Once again, we are unintentionally or, intentionally pushed into“constant, ongoing grief” that we cannot shake off or even come close to processing. Unexplained, it is a life sentence of pain at a time when we desperately needed the opposite.

This is the truth. This is the debilitating, mentally abusive, harmful & “INHUMANE TREATMENT” that is currently happening about every 3 seconds somewhere to virtually defenseless people.

NO,  STOP & THINK about this! 50 million people today plus, “10 million more people” every year. This may well be the “Most Inhumane Tragedy of Our Century”!

Now, feel free ask me why I am such a boisterous advocate for people living with Dementia and our Human Rights.

I dare you to ask me why people with Dementia suffer.

“Living well with Dementia may well be, the best lived experience of my life now that I have recovered from being inhumanly treated”.

Jerry Wylie © 2018

Watch our latest Webinar on Preventing, stabilising or reversing dementia

Our very sincere thanks to Dr Dave Jenkins and his partner Miki Okuno for their efforts in presenting to our DAI members and supporters last week on the Bredesen Protocol. They are based in Bali currently, so it really was an effort, as it was 4am for them!

 

We understand there are a lot of people who see this approach as futile, especially if they have been diagnosed many years ago and their dementia has progressed. Perhaps some even see it as a scam.

However, for many of us diagnosed with dementia who have already worked hard changing our lifestyles and improving our health, and who also believe by doing so we may also have slowed down the progression of our individual dementias, it is still hopeful. Make up your own mind, but please do not discount new evidence.

This protocol is based on evidence based research, and hopefully one day, advice for people with dementia on improving our lifestyle, our diet and offering us appropriate disability support and authentic rehabilitation will become the norm, as it is already for most of the other chronic diseases.  Improving well being and quality of life, even if it is not a cure (and even if it does not reverse or stabilise dementia),  has to be a good thing…

It was a very lively Q & A Session following this webinar and which lasted over an hour, although for privacy reasons, we never show that part of the webinar publicly.

To listen to or be a part of the Q & A session, you always have to register for our Webinars and attend.  You can go to our Youtube channel to watch other videos, and go to our events page to register for our next webinar, Dementia 101, by Associate Professor Lee-Fay Low.

Dementia Awareness Month 2015

Glenn Rees 1050 x 525Welcome to World Alzheimer’s Month!

However, as with some countries, Dementia Alliance International has chosen to call it Dementia Awareness Month 2015, as that covers all of our members, many of whom have a dementia other than Alzheimer’s Disease.

We are aiming to have more activity here than usual, and are kicking off this special month with your invitation to our September A Meeting of The minds Webinar.

Our eminent guest speaker is Mr Glenn Rees, AM, Chair of Alzheimer’s Disease.

Please register here for your free tickets…

 

The topic is: Global Perspectives of Dementia: what are the priorities?

The 2015 World Alzheimer’s Report sets out a call to action and some conclusions and recommendations, found at the end of the report under Final Conclusions and Recommendations in the report.

How should people with dementia think about these? What are the priorities from a consumer perspective? 

The objective of this presentation and discussion is to help frame some thoughts, which will guide ADI and DAI in their partnership and work.

You will have the opportunity to ask questions and join the conversation after Glenn’s presentation, and we look forward to seeing in you at this event. 

Your donations are sincerely appreciated; they do make a real difference to the lives of people with dementia through supporting the work of Dementia Alliance International. Please donate here…

Image source: Alzheimer's Disease International
Image source: Alzheimer’s Disease International

 

Belated update

Screen Shot 2015-07-28 at 10.18.21 amHello.

This month, as Editor of DAI, it has not been physically possible to keep up with the many commitments I have had in this group, and many others, so I would like to apologise for missing three weekly blogs.

What we can’t do alone, we can do together, but there simply have not been enough helpers to ensure even the basics of our organisation happen this month.

Tribute to Richard Taylor

The passing of Dr Richard Taylor, one of our founding members, and a long time advocate and activist for improving the lived experience of dementia, has also take its toll on our members, and the global dementia community, and to help members, Laura Bowley provided a Zoom chat room on Tuesday; thank you Laura for doing this, it was a good opportunity for people to share their grief.  DAI also continued with Richard’s Thursday support group to allow people to express their feelings and talk about their own memories of Richard.

Keep this date free:

  • August 19 (USA/Ca/UK/EU)
  • August 20 (AU/NZ/Japan/Indonesia)

DAI will be holding a Tribute to Richard Taylor event as part of our A Meeting of The Minds Webinar series.

Details including times will be sent out ASAP.

July 2015 Member update

As far a a July Members update, we were unable to hold the Open Members meeting in July, and I have not written a report to publish here, but suffice to say, there is actually little to report, and so we will provide a two month update at our Open Members meeting in the third Tuesday/Wednesday of August.

Again, our apologies and we hope to see you at the August Open Member to give you an  update, and to hear your views. I’ve not even had time to write up the survey results either, but hope to have that done by this update as well.

Thank you for supporting Dementia Alliance International.

Kind regards,
Kate Swaffer
Chair, Editor, Co-founder