Day 1: Exploring the reality beneath the top of the iceberg
“Our engagement is not tokenistic, it is meaningful and we use all our life skills. I want others living with dementia to have the opportunity to be involved and I know arranging that involvement can be difficult. We want to share what we have learned” (Sean Mackell, Irish Dementia Working Group, The Alzheimer Society of Ireland)
During the first plenary session of the conference, ADI’s CEO Paola Barbarino was joined by Dévora Kestel (WHO) and Nils Dahl (German Health Ministry) to discuss why we all need to do more in making dementia a global priority. Paola urged for continued advocacy at all levels: “I know we can count on you. Real challenge is achieved by collective work, let’s go together to inject hope in the age of dementia.” It’s encouraging to see an increasing number of national dementia strategies, but how can we make sure that they are accompanied by sustainable funding and that people with dementia are involved in the creation and implementation process? Infrastructure needs to be put in place to support their meaningful involvement.
The first conference highlight was the special symposium organized by Dementia Alliance International (DAI) with powerful personal testimonies from DAI members and a strong message for policy makers around the world: “People with dementia have a human right to more ethical care, tailored post-diagnostic support and full participation in society.” People with dementia should never doubt their capacity to live life to the fullest, that is what advocacy can teach them and society and that’s why it’s still so important to tackle stigma around dementia.
It was good to hear about the efforts undertaken around the world on reducing stigma during the next session, with some interesting initiatives from Japan and Malaysia and a clear overview of the key findings of the 2019 ADI ‘World Alzheimer Report’ dedicated to the topic. In my opinion, breaking down the stigma around dementia and raising awareness should form the basic pillar of all national dementia strategies because it impacts almost all other medical and care challenges.
Following this Paola Barbarino (ADI) raised a clear call to action for a more person-centered journey in care, treatment and support for people with dementia during the Roche-sponsored symposium ‘Envisioning the Alzheimer’s Disease Healthcare System of the Future’. I’m convinced that more collaboration between the biomedical and the psychosocial research field are key here to move forward.
The first day of the ADI virtual conference concluded with a roundtable discussion on the global incidence, prevalence and cost of dementia. The information packed discussion stressed the urgent need for accessible data to bring about sustainable change at a policy level. An intercultural and multidisciplinary approach is vital here.
This slide with the words of Emily Ong (DAI) perfectly sums up an inspiring first day at the ADI Conference for me: “Too often we only see the top of the iceberg, people with dementia help us to see the reality beneath the iceberg.”
Day 2: Policy makers need to be more ambitious
“Individuals can do a huge amount, governments can do even more.” (Gill Livingston, University College London)
The second day started with a session moderated by Katrin Seeher (WHO) providing a clear overview of the challenges and opportunities in dementia prevention. The scientific evidence is compelling and we need tailored communication to spread the message to the general public. In his presentation ‘From FINGER to SINGER’ Christopher Chen provided useful insights from the SINgapore GERiatric intervention study to reduce physical frailty and cognitive decline (SINGER). Gill Livingston concluded the panel with policy recommendations from the August 2020 Lancet paper on dementia risk reduction. I appreciated her reminder that messages of health promotion and prevention of dementia too often only reach the ‘believers’. Policy makers need to be more ambitious so that the most vulnerable people are reached and empowered.
After the launch of the ADI & ITN Productions film ‘Hope in the age of dementia’, the conference continued with a session on diagnostics, treatment, care and support for people with dementia. It was good to see attention for the cultural diversity of the caregiving journey highlighted during this session and throughout the conference. Sociocultural integrity and faith are key considerations in the delivery of person-centered care. The ongoing COVID19 pandemic adds so many new challenges; it has never been more important to ensure that voices of people who experience life with dementia daily are included in public debate, to provide answers to the new questions raised.
COVID19 was also discussed in the next session ‘Dementia Innovation Readiness Index 2020: 30 Global Cities’, supported by the Lien foundation. Global collaboration to share opportunities and solutions to challenges is a key driver in identifying and implementing best practice.
The topic of global collaboration was high on the agenda of the next session about the STRiDE project (STrengthening Responses to dementia in DEveloping countries). The key goal of STRiDE, a transnational collaboration between India, South Africa, Kenya, Jamaica, Brazil, Indonesia and Mexico, is understanding the impact of dementia in various cultural, social and economic contexts in order to support development, financing, planning, implementation and evaluation of national dementia strategies. Projects like this are crucial to address stigma around dementia and enhance powerful policy initiatives across cultures. Moreover, they contribute to a paradigm shift in research from the dominant focus of high-income countries towards more engagement of low- and middle-income countries. The enthusiasm and dedication during the STRiDE presentation reminded me of a quote from the anthropologist Margaret Mead that sums up the second day at the virtual conference: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
Day 3: A better balance between safety and wellbeing is needed
“There is no one size fits all solution to dementia, but there are many causes for hope.” (Richard Fleming, University of Wollongong)
The first plenary of the day featured inspiring talks by Alireza Atri (ADI’), Seong-Yoon Kim (Asan Medical Center, Seoul) and Eileen and Dubhglas Taylor, experts by experience from Australia representing DAI. Alireza Atri presented a very appropriate slide to kick off the last conference day. Empathy should be the heart and soul of our mission in search of the best possible care and support for people with dementia. We should not only offer people with dementia and their loved ones perspective for the future, but actions must be made tangible for them today, as Eileen and Dubghlas Taylor stressed in their presentation. Research has the power to translate ambitions into practice and providing timely diagnosis is certainly one of them. This point was echoed in a later session during the courageous talk by Juanita Hughes from Australia about her life with frontotemporal dementia.
The next session was dedicated to the impact of COVID19 around the globe. Some of the creative ways of coping with isolation were really touching, like the beautiful story of Jason van Genderen from Australia about his family experience with dementia and COVID19 and how he uses the power of storytelling in his documentary project. My overall conclusion of the animated panel discussion: the coronavirus pandemic should enhance a more human rights-based approach in future (inter)national dementia strategies. A better balance between safety and wellbeing is needed.
Another conference highlight was the spotlight session on brain health and gender organized by the ‘Women’s Brain Project’, an international non-profit organization focused on sex and gender determinants of mental health as a gateway to precision medicine. This was a very informative session with some fresh insights on the challenges around gender equality and dementia care, policy and research. A strong call to action was raised during the panel discussion: “Prevalence differences in population groups require data-driven specific diagnosis and treatment.”
Following this inspiring final panel, it was time to say goodbye. Accompanied by beautiful piano playing by Alzheimer’s Association Japan’s Noriyo Washizu, ADI delegates sung a heart-warming rendition of the Louis Armstrong classic ‘What a wonderful world’. It reminded me of the opening words of the President of Singapore, Halimah Yacob, on the first day of the conference: “Hope is what united us. Despite the difficulties of this year, there is so much to look forward to.” I sincerely look forward to connecting ‘in real life’ at the next ADI conference, but in the meantime I’d like to congratulate ADI and the organizing team for a great conference that definitely offered food for thought and steps forward towards future collaboration initiatives.
For more on the Alzheimer’s Disease International virtual conference, check out #ADI2020 on Twitter.
Olivier Constant -Communications Officer – Flanders Centre of Expertise on Dementia