Category Archives: A Meeting Of The Minds Webinar

Rehabilitation and dementia: evidence & opportunities

Our November “A Meeting Of The Minds” Webinar is by Associate Professor LeeFay Low fom Sydney University. The topic, Rehabilitation and dementia: evidence & opportunities, will be of great interest to members and professionals, and we hope you will join us.

 

 

 

 

 

About the Webinar:  The World Health Organisation has defined rehabilitation as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments”. Research and practice relating to dementia is predominantly focused on prevention, disease-modifying treatment, and care. This presentation will review the current evidence for rehabilitation strategies (e.g. exercise, cognitive training, occupational therapy) in dementia, and outline several ongoing studies. Barriers to rehabilitation for dementia will also be presented.

Register here…

About A/Professor Low: Lee-Fay Low (BSc Psych (Hons), PhD) is Associate Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, and Head of Behavioural and Social Sciences in Health in the Faculty of Health Sciences, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.

A/Prof Low conducts research that she hopes will make a difference in the world.

Her main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.

She has authored over 100 peer-reviewed articles, as well as two books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.

Register here…

Wednesday, November 28, 2018 – times (USA/UK/EU/CA):

10:00 am  Honolulu
12:00 pm  Oregon Portland/San Francisco USA
12:00 pm  Vancouver CA
2:00 pm    Des Moines/Chicago USA
3:00 pm    New York USA
3:00 pm    Toronto CA
8:00 pm    London/Glasgow UK
9:00 pm    Paris, Munich, Amsterdam, EU

Thursday, November 29, 2018 – times (AU/NZ/JP/IND/TWN):

6:00 am    Adelaide AU
6:30 am    Brisbane AU
7:00 am    Sydney/Melbourne/Canberra/Tasmania AU
4:00 am    Perth AU/Taipei TWN
5:00 am    Tokyo, JP
9:00 am    Auckland, NZ

The webinar runs for 1 hour. 

Check your time if not listed above by using clicking this link… 

Register here…

 

COST TO ATTEND:

  • FREE for DAI members and their care partner (if you have dementia, please join here: www.joindai.org
  • $40 USD for all others
  • $20:00 USD Students (FT, unemployed)
  • DONATION (this is not in lieu of a paid ticket unless it is higher than the fee, if you do not fit into the FREE ticket category)

THE SMALL FEE PAID FOR SOME ATTENDEES OF THIS EVENT IS GREATLY APPRECIATED.

WEBINAR FEES AND DONATIONS ARE OUR ONLY SOURCE OF REGULAR REVENUE. WITHOUT THEM, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

PLEASE DONATE HERE: https://www.dementiaallianceinternational.org/donate/

If you need a certificate of attendance, please email us at [email protected]

Note: the Q&A  session at the end of our webinars are never available publicly, and therefore will not be available after the event. Some webinars are available on our YouTube channel, but not all depending on each presenter, or the quality of the recording.

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

DAI Webinar: Living the U.S. National Dementia Plan

 

For DAI’s August monthly “A Meeting Of The Minds” Webinar, as some of us have been in Chicago attending the ADI Conference, we thought we’d bring some of Chicago and the conference to you!

Hence, our presenter is DAI’s Vice Chair, Jerry Wylie, who was an invited Plenary speaker on Day 1 of the ADI Conference.

Living the U.S. National Dementia Plan

About the Webinar: Jerry is an advocate living with dementia, and the Vice Chair of Dementia Alliance International. He was an invited Plenary speaker on Day 1 at the recent ADI Conference in Chicago.

At this DAI Webinar, we will bring Chicago to you, as Jerry has agreed to re-present his very impressive keynote speech.

In this presentation, Jerry shares his personal perspective on his involvement in contributing towards the development of the National Plan to Address Alzheimer’s disease through his work with Ian Kremer (LEAD). This session will address the following key points: momentum achieved in development and implementation of plan; inclusion of individuals impacted by dementia; importance of funding to achieve plan goals.

He also shares how he believes that he was SET UP FOR FAILURE… With NO SUPPORT to live positively with dementia, and how this almost resulted in him taking his life due to the hopelessness this left him. He shares what is in the US National Plan, and what is missing, in a way that is poetrful, with messages that speak clearly to everyone, includign pplicy makers.

About our presenter, Jerry Wylie:

Jerry Wylie was diagnosed with dementia at age 62 in June of 2015. Jerry was Helicopter Crew Chief in the US Army between 1971-1974. He studied Criminal Law at Pikes Peak Community College and Linn-Benton Community College and was the founding Member and Past President of West Salem Rotary Club. Jerry had a 40-year career in Business Management specialising in business growth and increasing profitability.

For Jerry, not having a college degree meant always having to “work” his way up. For a highly specialised division of ICI Americas, Jerry worked his way up to US Western Region Manager, having charge of 1/3 of US and 1/3 of Canada to include manufacturing, distribution and sales of products for repair and restoration of major concrete structures such a bridges, dams and concrete road ways.

Jerry later managed and grew two local Commercial Construction Companies to the point that their owners were able to retire comfortably. He then took on the task of starting a New Branch of a Home Construction Company in a new territory. He was able to take that business from building zero to 70 houses per year in just 5 years, during this last recession.

In 2014 Jerry began having issues with short term memory, multi-tasking and organisation. In June of 2015, Jerry was diagnosed with dementia.

Jerry is a current Member of Dementia Alliance International (DAI) Board of Directors, an active guest speaker at Rotary Clubs across Oregon and works with the Oregon Alzheimer’s Association. This November will mark 44 years of marriage to his wife, Kathy.

Please note: this webinar may not be made publicly available after the event; the Q & A sessions are never made publicly available to view.

Wednesday, August 22, 2018 – times (USA/UK/EU/CA):

  • 2:00 pm Portland/San Francisco USA
  • 4:00 pm Des Moines/Chicago USA
  • 5:00 pm New York USA
  • 11:00 am Honolulu
  • 5:00 pm Toronto CA
  • 2:00 pm Vancouver CA
  • 10:00 pm London/Glasgow UK
  • 11:00 pm Paris, Munich, Amsterdam, EU

Thursday, August 23, 2018 – times (AU/NZ/JP/IND/TWN):

  • 6:30 am Adelaide
  • 7:00 am Brisbane/Sydney/Melbourne/Canberra/Tasmania
  • 5:00 am Perth/Taipei
  • 9:00 am Auckland, NZ

The webinar runs for up to 1.5 hours.

Register here…

What’s a Dark Fog or Black Cat got to do with Dementia?

 

 

 

 

 

Please join us for our next “A Meeting of the Minds” monthly online Webinar “What’s a Dark Fog or Black Cat got to do with Dementia?” presented by DAI Secretary and her husband, Eileen and Dubhglas Taylor. DAI wishes to thank them for their willignness to share with us on this interestign and important topic.

  • USA/EU/CA – Wednesday July, 18  2018
  • AU/NZ/JP/ASIA – Thursday July 19, 2018

REMINDER: It is ONE EVENT,  in numerous time zones.

About the Webinar: Eileen Taylor, DAI Secretary shares her experience of what it is like to live with dementia in a unique way by showing how she has learned to externalizeher dementia by seeing it as separate uninvited entity such as a Dark Fog. She and husband, Dubhg Taylor are interested in feedback by exploring this concept with people living with dementia to discover their opinions in a focus group.

Externalizing is an effective communication tool for helping people living with dementia and their families to understanding the daily frustrations, challenges and victories in this journey. This presentation explores the benefits of seeing dementia as a separate entity by externalizing it and lessening the potential for interfering with relationship.

Register here…

 

DAI June Webinar: The STRiDE Project

Our third blog to support our members, and Dementia Awareness Week Scotland is a follow up to yesterdays blog, about the STRiDE Project. This webinar is an update of the progress the STRiDE research team have made since the kick off Workshops and meetings that Eileen reported on yesterday, highlighting just how far they have come, and perhaps even some of the  challenges to be faced ahead.

“A Meeting Of The Minds” Webinar, June 27/28, 2018

  • Wednesday, June 27, 2018 (USA/CA/UK/EU)
  • Thursday, June 28, 2018 (AU/NZ/JP/SGP/TWN)

Please note: this is one event, set in a number of different time zones.

Register here…

 

About Adelina: Adelina is an Assistant Professorial Research Fellow at the Personal Social Services Research Unit at the London School of Economics and Political Science. Her main research interests are economic aspects of care, treatment and support of people with dementia, and long-term care financing.

Adelina is the co-lead of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, a multi-national research project funded by the Research Councils UK’s Global Challenges Research Fund involving Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa.

She also works on the “Modelling Dementia” (MODEM) project which aims to estimate the impact, in terms of costs and quality of life, of making interventions that are known to work for people with dementia and their care partners more widely available.

Adelina is a member of the World Health Organisation (WHO) Guideline Development Group for Risk reduction guidelines for cognitive decline and dementia and a consultant for WHO’s Department of Ageing and Life Course.

She was also a co-author of the World Alzheimer Report 2016.

Adelaine says: I first learnt about dementia through my grandfather, he moved in with my parents when he needed more support, but loved going back to his own seaside home whenever I could take a holiday.

About the Webinar:  Approximately 50 million people globally are estimated to live with dementia, and about two-thirds live in low-and-middle income countries (LMIC).

Everywhere, dementia is a major cause of disability among older people and can have a huge impact on their quality of life, particularly if adequate treatment, care and support is not available.

Provision of care and support for people living with dementia can be socially and economically very costly. These costs are mostly borne by family members, particularly women and girls. However, in the face of demographic, societal and economic changes, there are indications that nations can no longer rely only on this informal family care for people with dementia. LMICs need to develop evidence-informed responses to dementia prevention, treatment and care.

The STRiDE (Strengthening Responses to Dementia in Developing Countries) project aims to build capacity in dementia research, in order to support the development of national policies for dementia.

The project brings together researchers and Alzheimer’s Associations from seven LMIC countries: Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa, and from the UK. The project is a partnership with Alzheimer’s Disease International and Dementia Alliance International, who are supporting the involvement of people with dementia in the project.

Please note: this webinar may not be made publicly available after the event; the Q & A sessions are never made publicly available to view.

Wednesday, June 27,  2018 – times (USA/UK/EU/CA):

  • 2:30 pm San Francisco USA
  • 4:30 pm Des Moines/Chicago USA
  • 5:30 pm New York USA
  • 11:30 am Honolulu
  • 5:30 pm Toronto CA
  • 2:30 pm Vancouver CA
  • 10:30 pm London/Glasgow UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

We apologise again for the late time in the EU, UK and Scotland, due to the season and dalylight savings.

Thursday, June 28,  2018 – times (AU/NZ/JP/IND/TWN):

  • 7:00 am Adelaide
  • 7:30 am Brisbane/Sydney/Melbourne/Canberra/Tasmania
  • 5:30 am Perth/Taipei
  • 9:30 am Auckland, NZ

The webinar runs for up to 1.5 hours. 

Check your time using this link… 

COST TO ATTEND:

  • FREE for DAI members and their care partner (if you have dementia, please join here: www.joindai.org
  • $40 USD for all others
  • $20:00 USD Students (FT, unemployed)
  • $50 The cost of this ticket will be used exclusively to support people with dementia to attend ADI CHICAGO 2018
  • DONATION (this is not in lieu of a paid ticket, if you do not fit into the FREE ticket category)

THE SMALL FEE PAID FOR SOME ATTENDEES OF THIS EVENT, OR THE CONTRIUTION TO SUPPORT DAI MEMBERS AND THEIR CARE PARTNERS TO ATTEND CHICAGO, IS GREATLY APPRECIATED.

Register here…

 

DONATIONS ARE OUR OTHER ONLY SOURCE OF REVENUE.

WITHOUT THEM, DAI COULD NOT PROVIDE THE FREE SERVICES IT PROVIDES CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

PLEASE DONATE HERE… 

If you need a certificate of attendance, email us at [email protected]

Note: the Q&A  session at the end of our webinars are never available publicly, and therefore will not be available after the event. Some webinars are available on our YouTube channel, but not all depending on each presenter, or the quality of the recording.

DAI in Top 20 Dementia YouTube Channels in 2018

Dementia Youtube Channels List.

“The Best Dementia Youtube Channels from thousands of Dementia Youtube Channels in our index using search and social metrics. We’ve carefully selected these youtubers because they are actively working to educate, inspire, and empower their audience with frequent updates and high-quality videos.

This is the most comprehensive list of best Dementia Youtube Channels on the internet and I’m honoured to have you as part of this! I personally give you a high-five and want to thank you for your contribution to this world.

These Youtube Channels are ranked based on following criteria

  • Total youtube channels subscribers, video views, and video uploads
  • Quality and consistency of videos
  • Youtube search ranking
  • Feedspot editorial team’ objective and subjective review”

DAI received an email yesterday announcing we had  made the Top Dementia Youtube Channel list for 2018.

Firstly, SINCERE CONGRATULATIONS to every other youtuber who has made this Top Dementia Youtube Channels list!

We are very proud to have made this list. Without the generosity of so many supporters, academics and professionals, willing to present to our members and supporters at monthly Webinars, and our members always willing to share their stories and presentations, we could not provide the truly authentic content we have on our YouTube channel.

The most impactful voices in the global activism for dementia and rights at places like the WHO and UN, has been the voices of people with dementia, most often through DAI.  DAI started the global activism and campaign in March 2015 at the WHO First Ministerial Conference on Dementia in Geneva.

Our YouTube channel has also contributed to our work, and to supporting so many others facing dementia, or academics and proessionals working in the field. If our YouTube Channel has positivley impacted your life or work, please consider donating.

Thanks to everyone from all of our members for helping us get to where we are today, and for making this award possible.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has(Margaret Mead)

Our February Webinar

Our February “DAI: A Meeting of The Minds” Webinar, “Raising dementia awareness amongst primary school children”, presented by Dr Pippa Burns is now available on our YouTube channel. We encourage others to get involved in projects like this, and know that Pippa is keen to connect with you.

If you appreciate the content of this video, and our YouTube channel in general, please consider making a donation.

Project DARE (Dementia knowledge, Art, Research and Education) is a novel program that it seeks to increase awareness of dementia amongst primary school children. It was developed by a multidisciplinary team, to target children aged 8-10 years, using a variety of subjects and teaching strategies that had been matched to the curriculum.

Pippa is a Lecturer in Research & Critical Analysis at the University of Wollongong. She has extensive experience working in health, across sectors, including experience researching and evaluating programs conducted in real-world settings, such as schools, hospitals, aged-care facilities and the community. Pippa is currently involved in research across three main areas: health literacy; medication misadventure and delirium and dementia.

Dementia Alliance International (DAI is a non-profit group of people with dementia globally who seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia at www.joindai.org

Or you can subscribe to our newsletter or weekly blog by visiting www.infodai.org

Pippas slides can be downloaded here: DAI February 2018 Webinar_Dr Pippa Burns_23012018

Of, By, and For People with Dementia

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