Category Archives: Uncategorized

Lyn Rogers shares why she is glad she joined DAI

Lyn Rogers is a member of DAI, and shares with us on Day 24 of Dementia Awareness Month, why she is glad she found DAI. Lyn has been a permanent resident in a nursing home (residential care facility) in the state of Victoria in Australia for over two years.

Lyn has a diagnosis of dementia and lives with other comorbidities, like most people over the age of 65. She moved to the facility from Queensland, therefore most of her family and friends are not living nearby, and although she uses a crutch, she loves to go for a daily walk, which is essential she maintain her mobility and emotional health. It has been much more lonely since the COVID-199 pandemic, as she has faced significant challenges being allowed to maintain her walking and other activities.

Thank you Lyn. We are really glad you found DAI.

https://youtu.be/pCYeS8NERbo

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Help more people with dementia like Lyn to have a voice, by  supporting DAI.

 

Protecting the development and implementation of public health policies from undue influence of unhealthy commodity industries

Statement by the WHO Civil Society Working Group on Noncommunicable Diseases. 

Published 11 September 2020

Protecting the development and implementation of public health policies from undue influence of unhealthy commodity industries.

This new statement on ‘Protecting the development and implementation of public health policies from undue influence of unhealthy commodity industries’ from the World Health Organization (WHO) Civil¬†Society Working¬†Group on NCDs calls on all relevant stakeholders¬†including WHO Member States, UN agencies, programmes and funds, international global health and humanitarian organisations,¬†NGOs, academic institutions and the media to protect public health policies from undue¬†influence of unhealthy commodity industries.

Download the statement here…

Kate Swaffer is pleased to represent Dementia Alliance International on this second WHO Civil Society Working Group, which is one of 36 Member organisations.

Follow our Dementia Awareness Month 2020 stories and campaigns below and check out our Art Auction

Jerry Wylie and the Dementia Warriors #DAM2020

Today was our monthly Cafe Le Brain, and unfortunately for everyone, one of the co hosts’ internet died, so it was a rather disjointed cafe! We had a few topics on the agenda, including with Jerry Wylie’s permission, watching a video made about setting his local support group, called the Dementia Warriors.

Jerry Wylie, USA

Therefore to support those who missed out on the video at our Cafe, for Day 16 of Dementia Awareness Month #DAM2020 #WAM2020, we are not only adding that video here, we are highlighting Jerry’s journey from diagnosis to now, by posting¬†two videos highlighting his incredible advocacy.

The first is a video recording of a presentation he gave at the ADI conference in Chicago in 2018. The second is a video that was made about setting up his local support group. It has been an incredible journey to partlt share with him; from diagnosis, to depression, to renewed purpose.

Thank you Jerry.

We are so glad DAI was the catalyst to help you see there is still a good life to live, in spite of dementia.

Jerry presents at the ADI Conference in Chicago

As a keynote speaker at the ADI Conference in Chicago in 2018, Jerry shared his deeply personal story, which included him sharing how he had been depressed and even suicidal after his diagnosis, and his passion became one of helping to stop other people’s lives being thrown in the bin after their diagnosis like his was!

People who become empowered to live positively and with renewed meaning and purpose is exactly one of the outcomes the original founders of DAI dreamed of. Life is short, so DAI works towards actively supporting people to get back to living their own lives, and also to have fun again.

Jerry Wylie, speaks on founding the Dementia Warriors.

Jerry often said that joining DAI saved his life, and attending a support group over zoom was the first time he had smiled or laughed since his diagnosis. He is now living the his life with true purpose ad passion, and we all applaud and congratulate him for having the tenacity to keep advocating, until this particular dream was achieved.

Well done Jerry, we hope other members may be inspired to follow you, and we are all very proud of what you have achieved, and how you continue to support families facing dementia.

Read the brochure about Jerry’s exciting Dementia Warriors support group.

Christine Thelker on why she is glad she found DAI #DAM2020

It is Day 14 of Dementia Awareness Month 2020 #DAM2020 and remarkably,¬†we’re almost half way through for our daily vlog/blog series.

For todays post, Christine Thelker from Canada shares with us all why she is glad she found Dementia Alliance International (DAI). She agrees that DAI has been Life Changing for her, and hears it has been for so many others, and Christine advocates for other people living with dementia in Canada and all over the world.

You should also check out her new website, and recently published book, For this I am grateful.

Thank you Christine. We are all glad you found DAI

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organizaton.

With more than 50 million people living with dementia, and the Coronavisus pandemic causing everyone to operate in a virtual world,  our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank  you.

Please join the Monday Science Podcast fundraiser to support more people with dementia like Christine.

#DAIisLifeChanging

New Report: Signalling Virtue, Promoting Harm

From the NDC Alliance: An important new report by NCD Alliance and Spectrum Research Consortium of preliminary findings and analysis of over 750 examples of how unhealthy commodity industries have been responding to the pandemic around the world. It has been published today to coincide with the Global Week for Action on NCDs, themed on accountability.

The report:¬†Signalling Virtue, Promoting Harm ‚Äď Unhealthy commodity industries and COVID-19¬†is now available to downloadable here:¬†https://ncdalliance.org/resources/signalling-virtue-promoting-harm.

Background: This crowdsourcing initiative began in response to demand from people Рincluding members of the WHO Civil Society Working Group on NCDs Рraising concerning examples of unhealthy commodity industry practices during the early phase of the pandemic.

These examples are of activities undertaken or presented by businesses as a response to the COVID-19 crisis ‚Äď including corporate social responsibility initiatives, philanthropy, new marketing campaigns, and engagement in policy development and debates.

The report focuses on unhealthy commodity industries identified by respondents to the survey – tobacco, alcohol, ultra-processed food, sugar sweetened beverages, breast-milk substitutes, fossil fuels, and gambling.

The report is organised around four broad categories of strategic responses evident in multiple countries and across diverse industries, and references almost 200 examples based on the submissions received.

The four chapters are:

  • Adapting marketing and promotions, increasing availability
  • Corporate social responsibility and philanthropy
  • Pursuing partnerships, coveting collaboration
  • Shaping policy environments

Watch this space: This report is necessarily very preliminary Рgiven the tight timescales involved we couldn’t fit all of the examples received into the report, and more analysis is to come. These unhealthy commodity industries are so actively undertaking to infiltrate daily lives and influence policy. With policy responses to the pandemic evolving so rapidly, we felt it important to make this early analysis public to document these activities and illuminate the need for stronger protections for NCD prevention policy today and as part of COVID-19 responses and recovery plans. We are working hard to update the interactive map, and further outputs are also intended, keep an eye out for these to be developed.

Please keep monitoring and contributing: This report may inspire you to continue monitoring these industries and holding them to account, so the researchers invite you to share new examples or developments on previous examples shared via this form: https://bit.ly/NCDA_SPECTRUM_MAPPING_TOOL

Tell the world: If you would like to share the report on social media, a sample message for inspiration is below (together with an image attached if you would like to use it):

Report by @SPECTRUMRes & @ncdalliance details examples of unhealthy commodity industries -like #alcohol, #tobacco, ultra-processed food & drink, are leveraging the #COVID19 #pandemic while their products contribute to #NCDs. Read more: https://ncdalliance.org/resources/signalling-virtue-promoting-harm #ActOnNCDs

Accountability¬†Workstream Webinar on 18 September: Lucy Westerman,¬†from the NCDA team¬†and¬†report co-author, will be presenting on the¬†report¬†during next week‚Äôs CS WG Accountability Workstream webinar in 18th September.¬†Please join to hear from Lucy and others discussing industry interference and¬†conflict¬†of¬†interest¬†both in and out of the context of the¬†pandemic, and for the launch of the¬†during which the joint CS WG¬†statement¬†“Protecting the¬†development and implementation of public health policies from undue influence of¬†unhealthy commodity industries‚ÄĚ.¬†Details and register here:¬†http://bit.ly/whocswg1

We hope you find the report Signalling Virtue, Promoting Harm enlightening and useful for your advocacy.

 

Emily Tan Tan Ong shares why she is glad she found DAI

On day 8 of the #DAI Dementia Awareness Month series of blogs or vlogs on why members are glad they found DAI, and  why DAI is Life Changing, Emily (Tan Tan) Ong shares with us why she is glad she found DAI.

Emily also shares how DAI has so positively impacted her self avocacy and courage, and her advocacy for others also living with dementia in Singapore and beyond. #DAM2020

Thank you Emily. We are glad you joined DAI.

 

Reminder: the Monday Science Podcast Dementia Series is Fundraising for DAI

#DAIisLifeChanging

Dawn and Maz: Why they’re glad they found DAI

On day 2 of Dementia Awarness month 2020 #DAM2020, we hear from DAI member Dawn and her partner Maz who live in Mebourne Australia, on why they are glad they found DAI. Dawn joins two of our peer-to-peer support groups each week, and occasionally, is inspired to get up early for avirtual Cafe or online Webinar!

Image source: Dawn and Maz

Dawn: I’m so glad I found DAI because I really enjoy the weekly support group sessions on Zoom.

I like that all the people in the Zoom sessions are pretty much like me and we talk about lots of things that we can still do. I like it when we share what we’re doing, such as what we’re cooking. It’s really good to hear other people’s experiences.

I appreciate that the others are very patient with me because I have Primary Progressive Aphasia and I find it difficult to express myself. Each week I write down what I want to say beforehand. Sometimes I read it and sometimes I just need it as a prompt.

I am so thankful that I was given Kate‚Äôs book ‚ÄėWhat the Hell Happened to my Brain?: Lvign Beyond Dementia‚Äô because it introduced me to DAI (and it is an excellent, positive book!)

Maz: I’m so glad my partner, Dawn, found DAI because the weekly support group sessions on Zoom have been very affirming and encouraging for her.

They are a space just for her, not for both of us, and it’s great for her to have her own voice without me doing most of the talking, which is what often happens when we are in group settings, online or face to face.

Although I sit off-screen, I am present each week as a communication support for Dawn when needed.

It’s great to hear the positivity and encouragement bouncing off the participants. Just hearing from others who are going through similar experiences and emotions is so important. As with any other group of people, the participants’ sharing is not always positive, and the hosts always treat any expressions of sadness with sensitivity.

We’ve also learnt about many useful resources through the support sessions and the DAI website.

Dawn comes away from the sessions with a smile on her face and a sense of connection with others. Although we’ve never met any of the others in the group, we both feel that they are our friends and we are so grateful to the hosts who so generously give their time and expertise.

Thank you Dawn and Maz.

YOU can help DAI to support more members like Dawn here…

John Sandblom: Improving Quality of Life

John Sandblom is a co-founder, Board member and the Treasurer of Dementia Alliance International (DAI). This is his keynote presentation at the opening Ceremony of the ADI Conference in Chicago. He shares the value of joining DAI, and of self advocacy.

“Improving quality of life for people with dementia” by John Sandblom

If you are watching this now, please consider donating to DAI. If you had been privileged enough to attend this conference and listen to John in persn, it would have cost you much more than the registration fee of more than $800 to attend the conference.

DAI is a 501 (c) 3 registered charity; a non-profit organization of people with dementia from 49 countries seeking 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. Our activisnm for the human rights for all will continue.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia. Join DAI here

Or you can subscribe to our newsletter or weekly blog, by registering your email.

Learnings from patients, by Dr Daniel Potts

In May 2019 DAI was delighted to host one of our “A Meeting Of The Minds”  Webinars, “Learnings from Patients and Families”, presented by Dr Daniel Potts.  We thank Dr Potts sincerely for giving up his time, and sharing his incredible insights, expertise and learnings, as well as his own deeply personal story. It’s an important webinar worth sharing again here.

Jerry Wylie and the Dementia Warriors

Supported by the Oregon University, the Alzheimer’s Association and many others, DAI member Jerry Wylie features in this wonderful video talking about the value of peer to peer support.

In fact, like many others with dementia, he sees it as an ‘essential service’ that everyone should be referred to soon after diagnosis. We are proud of all that Jerry continues to do since stepping down as our Vice Chair last year.

https://youtu.be/qi32xuva2HY

Congratulations Jerry, and thank you for all that you continue to do.