Dementia Alliance International is the peak body for, and the global voice of people with dementia, with members from 47 countries, starting with only eight co-founders in 2014 from three countries.
As we head into next week, where as Chair & CEO I am again representing DAI at the World Health Organisations Seventy First World Health Assembly, it is useful to be reminded of where DAI started, and the impact DAI has had, and continues to have on its members and on the world.
The World Health Organization (WHO) is a specialized agency of the United Nations concerned with international public health, and is a member of the United Nations Development Group.
Whilst others spoke or wrote about human rights for people with dementia before March 2015, it was in Geneva in March 2015 when as DAI’s then Co-Chair, and as an invited speaker, I gave a keynote speech on Day 2 of the WHO First Minsiterial Conference on Dementia. It included human rights and the CRPD in my three demands, and this seems to have had a snowball effect of ensuring the whole global dementia community has moved further away from rhetoric to more tangible action.
Action is important, especially as the United Kingdom has rebranded their Dementia Awareness Week to Dementia Action Week this coming week.
The eight co founders of DAI had high aspirations; they wanted to advocate for, but more especially to empower others with dementia to become self advocates, and to live more positively in spite of dementia, not only advocate for themselves.
Thankfully, many more people are active as advocates today, than when DAI started, and often we are told it is because of having been a member of DAI, and finding out there is still a good life to be lived, alongside of, or even in spite of dementia. It is a different life than the one we imagined before dmentia, but it is still possible to live positively and contribute in meaningful ways to society. That is, in fact, our basic human right.
One great example of DAI’s positive impact is Mary Radnofsky from the USA, who has become very active since being empowered initially through joining DAI, to ‘live her own life again’. In August 2016, she wrote, “… I was reminded of how much you turned my life around when I first met you.”
Through her involvement with DAI activities, such as being funded in 2016 to represent DAI at two events, one in New York where she read out a three minute DAI statement, and the other the Social Forum in Geneva, both funded by DAI to represent us all. She was also funded by DAI to attend two International conferences (ADI Budapest and Alzeimer’s New Zealand), she has found a renewed purpose.
It was initially through attending DAI’s weekly online support groups, and a lot of one to one mentoring and support that Mary became so actively involved with living again. She has since moved on to other missions and organisations, but it is exhilerating to see her, and so many others living positive and active lives again.
Many, like Mary, have been ‘kickstarted’ to reclaim living their own lives again, albeit often with new directions and purpose since their diagnosis of dementia, but largely due to joining DAI. Our peer to peer support groups are very powerful in healing, in helping us make sense of dementia. Finding support from other like minded people, facing the same disaease or situation is empowering.
Mary once wrote in an email to me (3 September 2016) stating, “I may not be an old friend yet, but you’re the most important new friend to me”, and she again wrote to me (30 October 2016) after attending the Social Forum at the WHO in 2016:
Such is the impact of DAI; empowering others to reclaim their own lives.
Most of all, DAI teaches others that they can ‘live with dementia, and do not need to just go home and wait to die from it’, as so many are still being advised to do.
We may not all stay in close contact forever after getting to know each other through DAI, but that is human nature.
DAI is proud of where it started, and what it has achieved in the last four years and almost five months, but we are also often exhausted. As an organisation, we have made a significant impact globally for a human rights based approach to dementia that includes disability rights, including rehabilitation, and for recognition and full access to the CRPD, CBR and SDG’s.
Our current 2018 board and Action Group is hard at work, making an incredible commitment to all of our members and the global dementia community, and I thank them all, on everyone’s behalf.
I’m planning to publish a daily blog throughout the Seventy First World health Assembly this week, to keep you all up to date.
Kate Swaffer, DAI Chair, CEO & Co-founder
For new DAI members or supporters, we highlight the DAI sevices and activities below. DAI is run by people with dementia, for people with dementia, with very limited funds, operating from an annual budget of less than $50,000 per annum, and still without any paid staff.
Free services for members include:
- Free membership
- Weekly online peer-to-peer support groups
- Buddying/mentoring of individual members as members are available
- Online discussion forums
- Support groups for people with more advanced forms of Aphasia, as requested
- A monthly online Cafe Le Brain and Open members meeting and monthly webinar
- Opportunties to get involved though our Action Group
- Support to write and submit abstracts, to attend conferences
- Bursaries to attend selected events, as fund raising permits
Services for members and the global dementia community of care partners, academics and professionals:
- A monthly Educational Webinar with eminent speakers, on current topics relevant to dementia
- Opportunities to be involved in research projects and focus groups
- The Brain Health Hub Facebook page and weekly brain health meeting (open to anyone trying to focus on brain health for MCI, their own dementia, or someone they support)
- DAI continues to offer it’s Zoom subscription to care partners, and to members of the LGBTI community or other groups, to run their own support groups
- Weekly blogs
- Monthly e-News updates
- Newsletters: “The Advocate”
- Active social media channels, including Facebook, Twitter and LinkedIn
- YouTube channel with free content (listed in the Top 20 Dementia YouTube Channels in 2018)