Dear DAI Members,
Firstly, we would like to welcome all new members who have joined us recently, and we sincerely hope we can get to know you and that you enjoy the many supports we have available to you.
We very much look forward to meeting you in our Support groups, on the Facebook groups, or at our Webinars.
It is now also possible for our blog readers to leave comments on our blogs, so we encourage you to do so, and look forward to the conversations there with you here as well.
As co-chairs, Jan and Kate wanted to report on our sessions and presence at the recent World Health Organisation (WHO) meetings in Geneva.
The first WHO Ministerial Conference on Dementia
The first WHO Ministerial Conference on Dementia was held in March, and as an invited plenary speaker, Kate had the opportunity to express the concerns and wishes of people with dementia for improving the car of the stated more than 47.5 million people with dementia, and asked that the focus of research not only be for a cure, but for improved care including rehabilitation and prevention.
I thanked them for including us and stressed the importance of inclusion, in the same way as people with any other disabilities, are included as equal partners in the conversations about them. We implore governments to invest more money into research, but we would hope that there is a more balanced focus in research for improved care.
These are our three key pointsI made, which were included in the WHO Final Call to Action;
- Our human right to a more ethical pathway of care
- Being treated with the same human rights as others, under the Disability Discrimination Acts and UN Convention on the Rights of Persons with Disabilities
- Research does not only focus on a cure, but on our pre and post-diagnostic care, and on rehabilitation in the same way a person following a stroke or any other brain injury.
Alzheimer’s societies and associations around the world, and people with dementia need to use the UN Convention on the Rights of Persons with Disabilities to benefit people living with dementia; this is our basic human right.
ADI have a global charter I can live well with dementia and for this to have any traction, people with dementia believe we must all include these goals in our work. Yes, we all want a cure, but, we want a better quality of life for those currently diagnosed with dementia, where best practice is the not norm, but the exception.
The WHO Assembly in Geneva
Co-chair Janet Pitts (now Mrs. Ford) represented DAI at the May WHO Dementia Assembly in Geneva: My journey to The World Health Assembly annual meeting in Geneva, Switzerland was both educational and motivational. Although I did not have the pleasure of the company of others with dementia, I walked away with a lot of information.
One of the highlights of my trip was meeting with The Ambassador of Human Rights for the United Nations. The focus of the meeting was on the lack of availability of services in middle to low income countries. I was given the opportunity to introduce DAI, our vision, mission, current and future goals. We agreed there were many areas where our ideas over-lapped. Inclusion was discussed in detail and it was felt there may be some boards and committees forming that would greatly benefit from having people with dementia as part of the leadership. The ambassador was glad to know there was an international organization such as ours to speak out for people with dementia.
The Open Members meeting next week, June 9-10
Regarding an update from the Board meeting this, we will provide you with a personal update next week at this meeting, but here is a basic agenda for the open members meeting next week on 9/10 June, to be hosted by us:
- Welcome and outline of how the meeting will be run and meeting protocols and guidelines
- Update from June Board meeting
- Update from Work plan
- The future of DAI
- Open discussion
Fondest wishes to you all,
Co-chairs: Janet Ford (Pitts) and Kate Swaffer
Editor: Kate Swaffer
Copyright: Dementia Alliance International