Members of the World Young Leaders in Dementia reflect on the Alzheimer’s Disease International Conference.
The Alzheimer Disease International Conference 2016 (ADI 2016) took place in Budapest (22 – 21 April 2016) and was open for everybody with an interest in dementia, including researchers, staff of dementia organisations, medical professionals, volunteers, people with dementia, professional and family carers. This year’s theme was “Think global, act local”, and we heard about actions on dementia strategies, good practice examples of dementia friendly communities, innovative training, and how to engage people with dementia in research or project development.
Involving people with dementia was a big topic at ADI this year, whether it be in research, the development of dementia strategies or dementia friendly communities. Many people with dementia gave inspiring talks on the law, ethics and the rights of people with dementia. These talks provided new insights into some of the current challenges facing people living with dementia and their caregivers in many corners of the world. The lasting impression was one of empowerment and inclusion.
The different experiences of people with dementia in their everyday lives were told in lectures or in between talks. One person spoke about being warned by her doctor of taking part in research studies because of unnecessary stress. Another person had been advised to stop working and driving immediately after receiving their diagnosis of mixed dementia. This advice had been overly cautious at the time and, although it was given with the best of intentions, they felt stripped of their identity and were left depressed and in mourning for their old life. The concept of managing risk while still enabling a person with dementia to feel included in society is the theme of research being conducted at the Alzheimer’s Society Southampton Doctoral Training Centre.
“What is good for your heart, is good for your brain!” – this is something everybody had in mind after several talks about dementia and lifestyle factors. Prof Henry Brodatry (University of New South Wales, Australia) drew particular attention to the reduced risk of dementia associated with exercise and the increased risks associated with smoking.
Another focus was the commitment of the World Health Organization to dementia. Dr. Tarun Dua (WHO) spoke about dementia as a public health priority. Several countries presented their national dementia strategies, such as Hungary, Austria or Norway. Dementia Strategies can define supply gaps or needs of action and create an overall concept and coordinated action regarding e.g. research, care, public awareness or the creation of dementia friendly communities. There was much discussion of how to support low and middle income countries in setting up similar strategies. One demand that came up many times was the need for a national dementia strategy in every country!
Recruitment and participation in dementia research was a prominent theme at ADI 2016. As investment into dementia research increases and more research studies are initiated, an increasing number of volunteers are needed to take part in these studies. More people with dementia, but also healthy people and those with mild memory problems should be motivated to participate in those studies. Join Dementia Research is a national service in the UK which is boosting the number of research volunteers, creating new research opportunities for people affected by dementia. The Alzheimer’s Society of Canada is taking an equally proactive approach to the challenge, developing guidelines and webinars to equip their regional offices to talk about research with service users and with local clinicians. Maria Karagiannidou from Alzheimer’s Disease International presented plans for their own website to promote research involvement, and to share information and best practice among its members.
The vision “Think global, act local” was also followed by the World Young Leaders in Dementia (WYLD) who met at ADI 2016 to plan further activities. WYLD is an emerging network for young leaders in the broad field of dementia and is made up of advocates, researchers and clinicians working to bridge the generation gap in the search for solutions to the challenges of dementia. WYLD was first brought together in 2014 by the UK Science and Innovation Network at events held alongside Global Action in Dementia Events in London, Tokyo, Washington D.C. and Ottawa. The aim of these meetings was to generate innovative approaches to improve care and cure of dementia, to raise public awareness and to reduce stigma. The network has continued collaborating across cultures, across countries, and across a broad spectrum of disciplines with the aim of implementing creative ideas for people with dementia, their careers and their communities.
The chance for members of the WYLD to meet at the ADI Conference was a great opportunity to learn together about new approaches in research, strategies and policies, prevention, care and involving people with dementia. Meeting each other face-to-face and discussing new improvements all over the world was particularly special for such a young network as WYLD. It is the best way to grow – so we’re looking forward to the ADI Conference 2017 in Kyoto, Japan (26-29- April 2017)!
Timothy Rittman is a Clinical Research Fellow at the University of Cambridge and Addenbrookes hospital. He is the Social Media Director for the World Young Leaders in Dementia.
Wienke Jacobsen is PhD-student (Public Health) from Hamburg, working for the Competence Centre Dementia and just developed the Dementia Strategy Schleswig-Holstein. She is a lecturer at the Hamburg University of Applied Sciences and a member of WYLD.
Clare Walton is a science communications professional working for Alzheimer’s Society (UK) and is on the steering group for WYLD. She has a PhD in cellular neuroscience.
Featured Image Credit: Harland Spinks, Flickr