Introducing the Three Nations Dementia Working Group #DAW2017 Day 3

Three Nations Dementia Working Group

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”.

His blog yesterday proudly announced the launch of a new Dementia Working Group, and we wish to congratulate the Alzheimers Society UK for supporting this group, as well as the inaugural members of this group. We are thrilled to be able to announce it here as well, as it adds to the every growing list of Dementia Working or Advisory Groups around the world. We are honoured Ken is a member of DAI, and extremely proud to know him, and many of the members of this exciting new Dementia Working Group many who are also members of DAI, Chris Roberts having also been a past Board member.
The image below is from Ken’s website where he states: “We have one member from each of the Alzheimer’s Societies 12 Regions”, and who are listed below. Congratulations to you all.

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