12 May 2015
KATE SWAFFER, Co-Chair, Dementia Alliance International
This article was originally published in ADI's newsletter, Global Perspective, March 2015 Vol. 25(1).
Dementia Alliance International (DAI) is the first global group, of, by and for people with dementia, where membership will remain exclusive to people with dementia. Dementia Advocacy and Support Network International (DASNI) was the first organisation set up in 2001 by people with dementia; however membership of DASNI did not remain exclusive to people with dementia and two thirds of their membership is now comprised of people who are carers or others without dementia.
In the last few years, the voices of people with dementia around the world have become stronger, led by some trailblazers including Christine Bryden, Peter Ashley and Richard Taylor. Ultimately a number of people with dementia met online, and finally sowed the many seeds of what was to become DAI, to give us back an autonomous voice, and to ensure issues such as social isolation, discrimination, stigma and exclusion are addressed. We started this group using the vast global networks of people with dementia now speaking and collaborating with each other over the Internet through blogs, Twitter, Facebook and other social media. We were established on 1 January 2014 to promote education and awareness about dementia, to eradicate stigma and discrimination, and to improve the quality of the lives of people with dementia.
The founding members of DAI are Richard Taylor, John Sandblom, Kate Swaffer, Steve Ponath, Janet Pitts, Dena Dotson, Susan Stephen and Amy Shives. Laura Bowley has also been a significant contributor to the emergence of DAI and its success, and we thank her for her support and passion. She has not been diagnosed with dementia, but has advocated for our rights for a number of years, and we hope that eventually we can raise funds to support a paid executive administrative position within this organisation, who may be a person with, or without dementia. Our 2015 Board Members are Co-chairs Janet Pitts and Kate Swaffer, Treasurer John Sandblom, Secretary Sid Yudowitch, and Sue Stephen, Agnes Houston, Helga Rohra, Chris Roberts, Leo White and Scott Russell.
Dementia Alliance International have modelled themselves on the establishment of the first of the dementia working group where membership comprises people with dementia. The Scottish Dementia Working Group (2002) led the way, followed by Europe (2012), Australia (2013), Ireland (2013), Japan (2014) and currently Canada are developing their own Dementia Working Groups. As such, the voices of people with dementia are becoming more unified, and global, as membership is comprised of only people with dementia, and supported by their national Alzheimer’s associations. DAI advocates for the voice and needs of people with dementia, and provides a global forum, aiming to unite all people with dementia around the world to stand up and speak out. By working with ADI, and all of these Dementia Working Groups, our vision; A world where a person with dementia continues to be fully valued, will be realised.
One of DAI’s major goals was to become the peak advocacy and support organisation for people with dementia, by people with dementia, and through collaboration with ADI we have now achieved that, and we are proud to be working with ADI, and to have more recently joined the Global Alzheimer’s and Dementia Action Alliance whose vision is “To transform the lives of people with dementia and those that care for them through building commitment and actions at a national and international level and through the sharing of best practice and learning”. ADI’s Global Charter states; “I can live well with dementia”.
We share similar goals and vision, and many of our members are living well, alongside their diagnosis of dementia. With ADI, the members of DAI look forward to networking into all countries, as, for now, membership currently only represents seven countries, and to assist this process, our website has a very functional translation button on it.
Services include weekly online support groups in two time zones, hosted by members in the USA, UK and Australia. We have a number of educational videos on our YouTube channel, including recordings of our monthly webinar series, A Meeting of the Minds. Members are engaged in various other activities and projects, and we have a Circle of Friends of more active members. We run sub-committees to develop educational videos, provide members with a media watch, offer a speakers bureau and undertake fundraising. We welcome new members, and are always supportive of people without dementia becoming involved, either as volunteers, or to assist us with fundraising or other activities for members.
Membership is free for people with dementia, and anyone can subscribe to our newsletters or weekly blog, all on our home page at www.dementiaallianceinternational.org
What we can’t do alone, we can do together.
