ADI2014 What an experience!
It was an overwhelming experience to put it mildly attending my first ever ADI Annual Conference! Some of my colleagues in DAI have attended numerous times but it was a first for me. And to have my first so ground breaking was quite the experience.
A very flattering independent piece came to my attention today about the conference that you can read about here.
Pictured above is Gill Phillips (a member of our advisory board) and Kate Swaffer who is on the Board and a founding member. We had a dream, some of us for quite some time, some a newer dream just last year that is now seeming to be steam rolling at a mind boggling pace. That is the organization we have started, Dementia Alliance International. We started talking and dreaming about it late last year and have said that officially it started in January 2014 although we are still working on much of the legal structure and legal standing of the organization. It has been a daunting task since ALL of the board of directors live with some form of dementia. We all have cognitive deficits and we have tried very hard to be accommodating to those deficits and work to function as a collaborative brain, so to speak, on all of our work to form this group.
Yes, we have already ruffled a few feathers but within the so called enlightened group of people there remains an astonishing amount of stigmas, misconceptions and the reinforcement of these beliefs. While many things that are completely a "DUH" moment for us that quite distinguished professionals present at these conferences as if they had discovered some highly sought after scientific discovery could have been simply answered by most people that I network with that live with dementia. This remains something bizarre to most of us because we are so rarely asked things assuming that we have dementia therefore we are not capable of rational, unique thoughts or inspirational things on how to live well with dementia, how to be the best possible caregivers and many other issues so critical to all of us that concern quality of life for people living with dementia. As my great friend and colleague in DAI Richard Taylor, PhD would say "you are not any closer to death than you were the day before you were diagnosed" and "we are going to die most likely because of dementia but guess what, all the rest of you are going to die too". We are just changing in ways the rest of you aren't, we have increasing disabilities and the sooner it is looked at that way instead of the stigmas, misunderstandings and complete lies the better for all of us living with dementia. We desperately need others to enable us, not further disable us! When someone is worried about us they need to not think ok, we take that away from them, they need to think how can I reduce the danger or how can I make it easier for them to do what makes them happy, what gives their life purpose and feel like a full human being.
The WORST thing we ALL hate is the common thing we hear about someone in later stage that they are "gone"! Really, they are right there, what do you mean gone? That is the biggest insult in the world. They might not be able to remember what your name is, perhaps they have lost the ability to speak but NEVER assume they don't understand what you are saying because the pure fact is no one knows! I believe it is the single biggest reason for what some see as problem behavior in care facilities, the person is so unhappy with their lack of purpose, joy and freedom but they can not express any of it in writing or verbal context. How might you react to being locked in a prison by beings that did not speak or understand your language, hand gestures or anything else? Stop and think about that point for a while and reflect upon it because that very well is what they are experiencing. Some are much better natured about their existence outwardly but there is NO question in my mind that people decline at a MUCH faster rate as soon as they are locked in to most of these facilities. They also decline at a much faster rate when all purpose and sense of freedom is taken no matter where they are living. Richard Taylor is convinced after 13 or more years in to a diagnosis that his continuing purpose of self-advocating, speaking and traveling, often by himself, is the single most important reason he is still so engaged and able to continue what he does which is amazing to those who hear him speak. I shared a room with him at the conference and it was an incredibly joyful time to spend so much time talking one on one since that had often been limited in our interactions with the organization. Another thing people absolutely must understand is that anyone else living with dementia has an instantaneous bond with others also living with dementia. It is why I started a secret support group made up of ONLY those living with dementia a couple of years ago. It continues to be a lifeline for those who live with dementia to be able to openly voice fears, struggles, frustrations and yes, lots of humor. I bet you think we lose that ability, right? Another misconception because there is wonderful, sometimes warped humor with us. We laugh at ourselves and we laugh at the ignorance around us about our condition. We make fun about the times when we as people with cognitive deficits can't hardly comprehend how ill advised the actions are of those who are supposed to be quite distinguished, educated and powerful and yet we are supposed to be the people you can't trust with decisions, yeah right.
The hugely disheartening thing about the conference which was held in San Juan, Puerto Rico was that in Latin America there is so much stigma that anyone diagnosed doesn't dare be public about it. It is still thought to be some type of insanity by the masses and you are shunned, perhaps locked up but always stigmatized to a level that is intolerable by anyone enlightened. Yes, there is so much work to be done in the US but there is even larger mountains in some countries but the encouraging thing is the countries that are doing wonderful things! The UK is making progress and having discussions that the US doesn't even seem to know they should have. Some of the Netherlands countries are doing amazing things as well as many other countries. So yes, things are slowly changing in some places but it is far too slow in the US, someplace that used to think of itself as a world leader on freedom issues yet we continue to stigmatize this disease, restrain the people with the disease both physically and chemically which, by the way, is now the most expensive disease in the US. Please help me my friends in a movement for change!
5/8/2014 09:23:16 am
This is a brilliant blog John, and a very good journalistic style piece about ADI2014, and about our dreams and wishes for a better world for people living with dementia. Thanks for writing it. Aussie hugs always, Kate
5/12/2014 04:47:29 am
I have worked mostly with people in mid to late stages of Alzheimer's and dementia, and I find what you are saying about stigma to be so true. Especially, "we are so rarely asked things assuming that we have dementia therefore we are not capable of rational, unique thoughts" and "We desperately need others to enable us, not further disable us!" It is refreshing (via Twitter) to make connections with people in the early stages, who understand how very frustrating it can be to try to get the fully cognizant population to stop putting so many unnecessary road blocks in the way because of stigma. If you are so inclined, please visit my website, have a look around, and write a guest blog. I'm attending an important conference in Washington D.C. next month, and I would love to refer people to your views on using creativity as a vehicle for meaningful communication for people in mid to late stages (a segregated segment of the population). People in mid to late stages not only have a hard time expressing their very valid opinions and thoughts, but they also lack a platform for those opinions or thoughts to be expressed in the public arena. I'm trying to change that, and perhaps my greatest allies will be people in early stages, who perhaps haven't been dismissed by the know-it-alls.
5/17/2014 05:50:42 am
Excellent piece John, agree entirely ! Folk just don't understand about living well with dementia
5/28/2014 02:57:00 pm
Hello, I am recently diagnosed with early onset atypical Alzheimer's primarily language and executive function problems. I'm 53 and worked as a school librarian until December 2013 when I took disability. In fact, I earned my masters degree in library science just 4 years ago, with a nearly perfect 4.0 gpa, and yet it was when I was finishing up my coursework that I actually first noticed verbal hesitancy and a lack of confidence because of early loss of fluency. My mantra now is 'I still have something to offer.' I have discovered meditative drawing, Zentangles, and hope that I will be able to hold onto that as an
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