Whilst DAI has held a number of workshops as part of the Alzheimer’s Disease International or Regional conferences, including in Melbourne, Budapest, New Zealand and Japan, we have not yet held our own DAI conference, seminar or event where people can attend in person.
We will also hold this as an online webinar at the same time, so that others can join us, and this event will replace our usual “A Meeting Of The Minds” Webinar in September. It will therefore be in two times zones, on September 19 & 20, 2017, but is still only one event.
Let’s hope this becomes and annual event, working together with local or national Dementia Advisory or Working Groups or Teams of people with dementia and their families, towards ensuring a better world and a stronger voice for all people impacted by dementia.
We apologise to those who live in a time zone where for you to attend it will be extremely inconvenient, but we do hope to record the sessions so they will be avialable to watch afterwards on our YouTube channel.
In January DAI hosted a Master Class “But you don’t look like you have dementia” about what is feels like when people who have been medically diagnosed with this or that type of dementia are accused of not looking like they have it. Kate Swaffer, our current Chair and CEO, and a co founder of DAI was maliciously accused of this late in 2016, to the point of feeling bullied by a reporter into disclosing decades of private, confidential and very personal medical to strangers and lawyers, and providing two highly confidential medical documents to the reporter. Once the reporter realised she was not a medical fraud, he still wrote a defamatory story which she responded to here…
Our Master Class “But you don’t look like you have dementia!”, held in an attempt to expose how commonly this occurs to most people ‘living well’ (at least publicly) with dementia, and how hurtful it is to people with dementia and their families. It also offers some advice on how to cope with it, and hopefully is helpful to those living without dementia, especially those who persist in doing this.
These people are the ones who have sat in doctors rooms and been told they have a dementia of this or that type, or a family member has it; they are the people told to get their end of life affairs in order and get acquainted with aged care services (often now referred to as Prescribed Disengagement®[i]).
Their families have been sitting alongside them, trying to hold it all together, and pick up the many pieces falling around them.
This phrase is said all too often to people with dementia who are publicly appearing to live too well, whether they have become public advocates, or are simply living well in their local communities. We even have many stories of staff working in advocacy organisations saying it, as well as many care partners who volunteer for these organisation’s.
One woman from Australia, diagnosed for over ten years, but still living alone in her own home, and living beyond dementia, said in response to to Kate’s blog, of her own recent experience of being accused of not having dementia:
“ A “close friend” challenged me recently when I explained that I just could not travel overseas, with the words “Anyway, you don’t have Alzheimer’s”, and each time when I tried to respond, kept hammering at me, repeating “You do not. You do not!” Then with a voice of ultimate authority “Anyway, others agree with me!” implying that friends we have in common see me to be a fake, a pretender, a liar, whatever.
I felt terribly assaulted, as though I’d been stabbed, again and again – and by one of my closest friends?
I was in shock, asking myself -“Why would anyone ever do this to themselves. A life sentence! Losing so much of one’s quality of life – one’s mind? All the books you can no longer read, and so much more, and still trying to be “normal”.It was, and still is, just devastating to feel betrayed, by someone so close to you.”
This habit, based on myths and preconceptions that everyone with dementia must look and act late stage for them to really have it, needs to stop, and in the worst cases, could be seen as a disability hate crime. There are too many people who have been medically diagnosed with dementia now in the public eye, either as speakers, authors, advocates or bloggers and who may not look like they have dementia, but in reality, not all the doctors around the world can be wrong. It is offensive, to the person diagnosed, to their families, and to their medical doctors, and quite simply, it has to stop.
It is harmful, hurtful, and wrong for anyone without dementia to accuse someone living with a chronic progressive terminal illness, that when diagnosed in the earlier stages of the disease, has mostly invisible disabilities.
In reality, as many people with dementia are now being diagnosed much earlier in the stages of the disease or condition causing their dementia, and although still being provided with late stage dementia management, they can and do often live well for many more years than was previously thought possible. And unlike something like Downs Syndrome, there is not a particular ‘look’ to dementia.
You can watch the recording of our webinar here… Please listen, and learn.
In honour of the late Dr Richard Taylor, we are posting another of the webinars he hosted for DAI last year, as part of our Master Class series during World Alzheimer’s Month. It is already Day 23 of #WAM2015, and the myths of dementia are still very much there, and our awareness campaigns are still not getting the message through well enough. We do hope this webinar helps to change that.
For Dementia Awareness Month 2015, #DAM2015 Day 8, we are re-posting a Master Class from 2014. It is an important conversation about talking to your doctor when you are diagnosed, hosted and facilitated by DAI members, two of who were medical doctors, Dr Jennifer Bute from the UK and Dr Dave Kramer from the USA, when they themselves were diagnosed with dementia.
First published on Sep 11, 2014 on our YouTube Channel.
In this webinar, our panel shared their experiences of sitting on both sides of the table – physician and patient — and talked about how to make the most of your visit to your doctor, how to get the information you need, how to understand what the physician is telling you, and how to advocate for yourself.
MEDICAL DISCLAIMER: Information and other content included on this Site or in this video (Master Class 2: My Conversation with My Doctor) is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a professional health care provider. This site and video does not provide medical advice. You may not use or rely on any information contained on the Site or in the Video for diagnosing a health or medical problem or disease. You should always consult a professional health care provider regarding any health or medical condition, prevention, or treatment. Do not delay or disregard seeking professional medical advice on account of something you have read on www.dementiaallianceinternational.org or viewed or heard in a video on this Dementia Alliance International YouTube channel.
Wednesday, August 19, 2015 (USA, Canada, UK, Europe) and Thursday, August 20, 2015 (Australia, NZ)
Mr Glenn Rees, AM, Chair, Alzheimer’s Disease International
Dr Al Power, Geriatrician, author, educator
More to be announced.
Richard Taylor PhD was a founding member of Dementia Alliance International, and has been an advocate and global voice for people with dementia for more than ten years. Sadly, Richard passed away at his home on July 25th, due to cancer.
Richard was 58 years old when he was diagnosed with dementia, probably of the Alzheimer’s type. He always began his videos and presentations with: “Hello. My name is Richard, and I have dementia, probably of the Alzheimer’s type.” “Hello” is such a simple word, but it in some ways it epitomized Richard, as his focus was on our continued humanity, especially that of people with dementia, and not on our deficits.
The members of DAI send their deepest sympathy to his family and close friends, and we hope they know how much he was loved and will continue to positively influence the dementia community.
This Tribute to Richard is your opportunity to remember Richard amongst others who also loved him.
There will be a number of speakers, including Dr Al Power paying their respects to Richard, followed by the opportunity for you to express in your own words (max 2 minutes), the influence Richard had on your life.
North America, UK and Europe: Wednesday, August 19
3:30 p.m. Pacific Time (San Francisco) and Arizona (Phoenix);
3:30 p.m. Mountain Time;
4:30 p.m. Central Time;
5:30 p.m. Eastern Time;
10:30 p.m. in the UK;
11:30 p.m. in Paris and Budapest
Australia, New Zealand, Indonesia, Japan: Wednesday, August 20
7:00 a.m. Adelaide;
7:30 a.m. Brisbane;
4:30 a.m. Jakarta;
9:30 a.m. Auckland;
6:30 a.m. Tokyo
On September 3, 2014, over 20 people gathered online in a “Zoom room” via video conferencing to learn how to plan and take control of their lives after a diagnosis of dementia. Our teachers were two DAI board members, both with dementia: Sid Yudowitch (USA) and Sue Stephen (Canada).
If you missed the class or would like to experience it again, here is the video.