Ken Clasper is a friend and member of DAI, who has also been a long time advocate for people with dementia in the UK, and who is an Ambassador and Dementia Advocate with the Lewy Body Society. He is diagnosed as having Younger Onset Lewy Body Dementia, and has “learned to live a new life doing things to help others with the illness”. Ken also says he is “honoured to be a member of Dementia Alliance International”.
Members (not in order of appearance in the photograph)
Chris Roberts, North Wales, and Linda Willis, South Wales
Danny Brown and Liz Cunningham, Northern Ireland
Ken Clasper, North East England
Joy Watson, North West England
Wendy Mitchell, Yorkshire and Humberside
Shelagh Robinson, West Midlands
Alex Preston, East Midlands
Peter White, East England
Hilary Doxford, South West England
Keith Oliver, South East England
Dianne Campbell, London
See the list below of the growing local, regional national or global groups of people with dementia.
2000: Dementia Advocacy and Support Network International (DASNI) http://www.dasninternational.org
This was the first group ever to be set up by people with dementia, but membership was not exclusive to people wit dementia, and the membership base is 2/3 care partners. Apart from a website, there are no specific services, but it is important to know this group of people, of whom four founding members are still active advocates, and all are members is Dementia Alliance International includes Christine Bryden.
2002: Scottish Dementia Working Group (SDWG) http://www.sdwg.org.uk/videos/home/about-us-sdwg/
2006: Alzheimer’s America Early Onset Dementia Advisory Group (AAEODAG) http://www.alz.org/about_us_early_stage_advisory_group.asp
2012: European Working Group of People With Dementia (EWGPWD) http://www.alzheimer-europe.org/Alzheimer-Europe/Who-we-are/European-Working-Group-of-People-with-Dementia
2013: Alzheimer’s Australia Dementia Advisory Committee (AADAC) https://www.fightdementia.org.au/about-us/advisory-groups/dementia-advisory-committee
2013: Irish Dementia Working Group (IDWG) http://dementiavoices.org.uk/group/irish-dementia-working-group/
2013: Japan Dementia Working Group (JDWG); unable to find a website for this group; I also learned at ADI Kyoto there are a number of regional Working Groups for people with dementia in Japan
2014: Dementia Alliance International (DAI) – www.infodai.org and www.joindai.org
Established on 1 January 2014 DAI is the only global advocacy and support group, of, by and for people with dementia, and the global voice of people with dementia. DAI now represents > 3500 members in 39 countries, and is a registered charity in the USA; membership is exclusive to people with a medically confirmed diagnosis of dementia.
DAI is in a strategic but autonomous partnership with Alzheimer’s Disease International, also their major sponsor. It provides free membership, free online support groups, cafes and other services, including educational webinars for the whole dementia community.
2014: Southern Dementia Advisory Group (the only working group to have been in a DFC initiative that has been recognised by the WHO, in 2016) http://www.southerndag.org
2014: Ontario Dementia Advisory Group (ODAG) http://www.odag.ca
This was started as a completely autonomous group by a regional group of people with dementia, and was not funded, restricted or informed by Alzheimer’s Canada, although I believe it is soon to become a national group supported by Alzheimer’s Canada.
2015: Highlands Dementia Working Group (HDWG) http://www.sdwg.org.uk/local-groups/inverness-dementia-group/
2016: DEEP Think Tank (not specifically a working group) http://dementiavoices.org.uk/group/dementia-policy-think-tank/
2016: Dementia Awareness Advocacy Team (Brisbane), presence on web via Facebook Group only at this stage
2017: The Three Nations Dementia Working Group (England, Northern Ireland and Wales) launched this this week, supported by the Alzheimer’s Society UK