Tag Archives: Dementia Alliance International: The global voice of dementia

The positive impact of DAI

Kate Swaffer gives her keynote presentation at the WHO Ministerial Conference on Global Action Against Dementia, Geneva. Tuesday 17 March 2015. Photo by Violaine Martin.

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:

I hope that your readership will benefit in many ways, since we wish to share the knowledge we gained from participating in the UN Social Forum as representatives of Dementia Alliance International. This was an unprecedented (and exciting!) opportunity to be part of a global attempt to improve the lives of people with dementia.

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

REMINDER:

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:

YOU can make a difference #DAW2016

Screen Shot 2015-07-28 at 10.18.21 amThis week during Dementia Awareness Week UK #DAW2016, we take time to remember the late Richard Taylor PhD, one of the co-founders of DAI. This organisation was a dream shared with him by many of us, and I hope he would be proud to see what we have achieved.

More importantly, I hope he would be most proud to see how we are continuing to support people diagnosed with dementia on a daily basis, and supporting them to live with dementia, not only to die from it. We are all keen on #LivingBeyondDementia

To help us with this dream, you have a special opportunity to donate to our current fundraising campaign. Every dollar, pound, Euro or the currency of your country that you donate goes directly to supporting people with dementia to support themselves.

Please donate here…

We are an extremely efficient nonprofit, no staff to pay, very low overheads, and importantly ALL the money you donate helps people with dementia to live a better quality of life with a purpose and support from others also living with dementia. Your donation will help reduce the stigma and discrimination.

Donations also help DAI continue its vital work on pursuing a human rights based approach for all people with dementia through the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). We operate through the hard work of many members who all have a diagnosis of dementia, and others on a volunteer basis. We also receive a lot of pro bono support from professional s and academics in dementia.

YOUR donation ensures there will be ‘Nothing about us, without us’.

It’s only Tuesday, and it has already been an exciting week following the launch yesterday of our guide to human rights, and you can download the guide here: Human Rights for People Living with Dementia – Rhetoric to Reality

“What matters to us now is that people living with dementia should be empowered to use their undisputed right of access to this and to other relevant UN Human Rights Conventions, including a future Convention on the Rights of Older Persons.” Professor Peter Mittler.

We rely on donations to continue our work in supporting ourselves and each other, and to reaching those people who are newly diagnosed, including one new diagnosis somewhere in the world every 3.2 seconds.

Thank you to everyone who is able to donate.

Whether it is $1, $10 or $500, every single dollar makes a difference to the lived experience of real people living with any type of dementia.