The presentation presented by John Sandblom titled Finding Our Voice was accepted for oral presentation was written by John, and co-chairs Janet Pitts and Kate Swaffer, was well received, and very timely. John has given us permission to add the slides and notes from his speech, although unfortunately, no-one managed to record it, so we cannot upload a video of it. Thanks John, you did an excellent professional job or representing our members and organisation.
This presentation will review the first year of a global advocacy and support group, of, by and for people with dementia called Dementia Alliance International. Our vision, “A world where a person with dementia continues to be fully valued” is being realised, as more people with dementia connect around the world, and speak up for their basic human rights. We speak up for full inclusion and a place at the international dementia table; as people with dementia we believe that without full inclusion at the conversations about the very things that affect our lives and futures is imperative. The stigma, discrimination, prejudice, myths of dementia and isolation are simply being exacerbated, by the organisatons or researchers purporting to improve our lives or advocate for us, without us. We will discuss the technology being used to support our work, allowing us to progress rapidly as an organisation with no funding, and with representation from a number of countries. We will also review the Master Classes run during Dementia Awareness Month 2014, and the value of the sharing of the lived experience of dementia. Finally, we will discuss how collaboration has been the key to our success, as well as allowing us to support the work of other people with dementia in individual countries such as the Scottish, European, Australian, Irish and Japanese Dementia Working Groups, rather than work against each other or in isolation. In its first year, DAI has become the peak advocacy body, supported by ADI, of by and for people with dementia.
Presentation slides and notes:
Notes: John’s personal introduction including diagnosis and current position with Dementia Alliance International and including his role as a founding member.
Please note: The content of this presentation and our website represents our opinions (however well-informed they may or may not be) and should NOT to be considered medical advice, it is not medical advice. Medical advice should only be obtained during conversations with your own medical doctor.
DAI started as a dream by many people with dementia, all of the founding members having varying versions of that dream, but it was driven by the desire for change, and the desire to increase awareness, education and most importantly, connecting with others people living with dementia all over the world. It is about people with dementia finding their voice, and being fully included.
Our vision is “A world where a person with dementia continue to be fully valued.”
Through empowering members to work on projects, speak out, and get involved in support groups, we believe the value of improving the quality of life for people with dementia is tremendous, and often life altering. Even when people are no longer employed, they can still be meaningfully involved and contribute to society.
People with dementia have an indescribable instant bond, perhaps because we are at great ease with one another, but mostly because you know the other person knows what it is to live with dementia, not questions necessary. Many people doing advocacy work on their own have now joined to work together with other DAI members.
What we can’t do alone, we can do together.
Through strong advocacy, we have collaborated with ADI, and are now the peak body globally representing people with dementia. Whilst we are an advocacy and support group, of, by and for people with dementia, with no ongoing funding, and some voluntary administration and other support, we still need to work towards finding regular funding, and finding volunteers willing to support our work.
All organisations require funding and manpower support, and Dementia Alliance International is no different.
We speak up for full inclusion and a place at every international dementia table… Nothing about is without us.
In finding our voices, we are continuing with the mission of DASNI and The Scottish Dementia Working Group, whose mantra was NOTHING ABOUT US WITHOUT US: Full inclusion will help to improve the lives of people with dementia, and reduce stigma, discrimination and isolation.
Like everyone else, we make mistakes and we may not be able to function at the same level as people without dementia, however that is no reason to no include us. We need to be allowed to fail, just like everyone else.
By not including us, the stigma, discrimination, prejudice, myths of dementia and isolation are being exacerbated by the organisations, researchers and service providers purporting to improve our lives or advocate for us.
NOTHING ABOUT US WITHOUT US will ultimately mean full inclusion will help to improve the lives of people with dementia, and reduce stigma, discrimination, isolation and other negative experiences of dementia.
What we do:
- Website, weekly blog, newsletters
- Weekly online support groups
- Advocacy and speaking roles
- Master Classes
- Monthly Webinars: A Meeting of the Minds
Supported by technology:
- Zoom platform for online
- Board meetings
- Educational webinars
- Master Classes
- Weekly support groups
Collaboration is the key to our continuing success.
DAI is a global voice
- We advocated for a person with dementia to become a member of the World Dementia Council
- A member was invited to present at the World Health Organisations first Ministerial Conference on Dementia in March
Living better with dementia… It is possible.
But the attitudes of, and support from researchers and health care professionals need to change on this.
The language of dementia also needs to change to language we find empowering, enabling and respectful. Please see Alzheimer’s Australia updated language guidelines – https://fightdementia.org.au/sites/default/files/language%20guidelines.pdf
“People will forget what you said; people will forget what you did… But people will never forget how you made them feel.” (Mayo Angelou)
“People will forget what you said; people will forget what you did…
But people will never forget how you made them feel.” (Margaret Meade)
Membership of DAI
- Membership of Dementia Alliance International is exclusive to people with dementia; click on the GREEN icon on our website
- Family carers, professional service providers, researchers and health care professionals are welcome to join our newsletter mailing list, and support us through donations, click on the BLUE or BLACK icons
You can all sign up to receive our weekly blogs when they are published by clicking on the BLUE button on the left had side of the website.