At the 35th Global Conference of Alzheimer's Disease International (ADI) held in London on 9-11 June 2022, Dementia Alliance International had a significant presence of its members who participated in this hybrid format either in-person, virtual or on-demand (refer to earlier DAI blog). There were several highlights during this year's conference:
The DAI Environmental Design Special Interest Group (ED-SiG) hosted its first virtual symposium on the importance of co-design and how technology can enable participation; examine assumptions held by environmental designers. Prior to this conference, DAI has always hosted a workshop at the ADI conference, focused more specifically on the voices of people with dementia and their care partners, as well as the topic of ‘Diagnosed with Dementia: What’s next”, with insights from people living with dementia themselves, on how the diagnosis and services provided could be improved.
DAI held its very first a virtual event as a Master Class on this topic during World Alzheimer's Month in 2014.
Helen Rochford-Brennan gave the Opening keynote speaker address; Helen is the Vice Chair of the Irish Dementia Working Group, a past Chair of the European Workign Group of People with Dementia, and a DAI member. Four current DAI Board members were speakers, symposium panelists, or fire chat presenters at the conference - Alister Robertson (Chair), Bill Yeates, Emily Ong, and Julie Hayden. Four past board members were also speakers – DAI co-founder Kate Swaffer was a keynote speaker and also gave a virtual presentation, Helga Rohra was a panelist at the ED-SiG Symposium, and Christine Thelker and Howard Gordon gave virtual or in person presentations.
Members of the DAI family from different countries who were speakers at the conference, included Natalie Ive (Australia) and Tomofumi Tanno (Japan, representing their respective dementia associations. Others, such as Dr Jennifer Bute had poster presentations.
The DAI ED-SiG symposium is unique and different because it is the first in the history of DAI symposiums where the speakers were dementia advocates and professionals calling for co-designs with persons with dementia. Kate Swaffer chaired the symposium with distinguished speakers including dementia self-advocate Helga Rohra (a past DAI Board member) and researchers, Jacki Liddle, Lesley Palmer and Saskia Kuliga. The other remarkable achievement was the shift of voice from the 2015 ADI Conference, where eminent professor Richard Fleming, architect Kirsty Bennett, and interior designer Debbie de Fiddes called for enabling design for people with dementia to inclusion of voice of persons with dementia. It showed the positive progress that DAI has made over the years in advocating for the voice, inclusion, and rights of persons with dementia.
At the conference, we have DAI members who took to the stage at the ADI Conference to present their respective papers for the first time - Emily Ong (Singapore), William Yeates and Natalie Ive (Australia). DAI is proud of its new advocates who are charting new heights in their advocacy work. Each of their papers focused on how they continue to live a positive and enabling life despite dementia by having a positive attitude, intervention, and support. It echoed the DAI mission - model living positively and beyond the diagnosis of dementia to other people with dementia and the wider community, and what living with purpose with dementia looks like.
DAI works indirectly with national dementia organizations or local Dementia Working Groups through its global members, who are also members of other organizations. For example, Julie Hyden, also an active member of the 3NDWG, is involved with webinars design for their local working group.
Since the keynote address - Enabling and Empowering People with Dementia as Viewed from the Inside Out, delivered by the late Richard Taylor (United States), one of the founding members of DAI at the 24th Conference of ADI 2009, the voice of people with dementia has been growing stronger with each successive ADI conference.
DAI started participating in the ADI Conference in Puerto Rico 2014 at the 29th International Conference of Alzheimer's Disease International with a DAI booth and four co founders of DAI as speakers; the late Dr Richard Taylor, Kate Swaffer, Janet Ford (nee Pitts), John Sandblom and Susan Stephen and a number of other DAI members living with dementia. Among the topics presented that year were the value of the DAI online peer to peer support groups, living beyond the stigma of dementia, non-pharmacological interventions, and the Prescribed Disengagement. We also held a panel session with members talking about their experience of living with dementia.
At the 31st International Conference of ADI Budepest 2016, Prof. Peter Mittler, the Human Rights Advisor of DAI at that time, delivered his keynote address - Nothing About Us Without All of Us. Kate Swaffer, Peter Mittler and Glenn Rees spoke at the workshop on Human rights and dementia: How to use the human rights agenda, a strategy supported by the ADI Board in partnership with DAI.
Over the years, DAI has grown its presence in the international conference of ADI as one strong voice to urge the government, private sector, and medical professionals to listen to the concerns of people with dementia and take action to address this urgent global crisis.
"Never doubt that a small group of thoughtful committed citizens can change the world - indeed it is the only thing that ever does." - Margaret Meade.
Authors: Emily Ong and Kate Swaffer