Tag Archives: Reflecting on 2018

Seasons Greetings

We wish everyone a safe and restful festive season, and a very happy and productive 2019. Thanks also for your support.

As we reflect on 2018, it is remarkable to think that at the end of this year, Dementia Alliance International (DAI) will be celebrating its fifth birthday.

From those early days of eight (8) founding members with dementia representing three countries, we have come a long way.  Most of all, we hope that our members gain strength and are empowered to live with a higher quality of life than they are told to expect, from knowing and meeting others also living with dementia.

For some members, DAI becomes a life long commitment and provider of support. For others it could be seen as a launch pad; one that helps them go back to living more positively with dementia. DAI is very proud of what we started, and what we continue to do, and sometimes in spite of varying difficult challenges and hurdles.

One of our mottos has always been, “onwards and upwards, in spite of the every increasing fog”, and we work to keep our vision, mission and values in sight, so that the hurdles of dementia don’t stop us from our work.

DAI was first set up as an advocacy and support group of, by and for people with dementia, to give us an authentic voice, and with the vision of “A world where people with dementia are valued and included.”.  

That is the uniqueness of DAI, as we do not have organisations or people without dementia telling us what to say or what to do. We are an autonomous group, with an autonomous voice, and although it can be difficult some days even to get dressed, together we are stronger. We can and we do achieve a lot, often with the direct support of each other, and by using a lot of low and high tech disability support.

In 2018, we have had a lot of new members join DAI, and there has been much activity locally, regionally, national and globally by members. We work collaboratively with national Alzheimer’s organisations as well as the emerging number of National and Regional Dementia Working Groups as requested. 

DAI is very proud to have recently partnered with Dementia Australia (DA), which you can read more about in our Media Release. They are the first national advocacy organisation in the world to have formally partnered with us. DAI is also pleased to have re partnered with Alzheimer’s Disease International, and are delighted the Taiwan Alzheimer’s Disease Association (TADA) have also given DAI a generous donation.

In 2019, we look forward to publishing our 2018 Annual Report, which will be full of the news about our many activities around the world, a number of reports, and the successes and goals we have reached this year. It will include the details of our recent Annual General Meeting.

We congratulate Dr Jennifer Bute on the recent release of her first book, Dementia from the Inside: A doctor’s personal journey of hope, available now. Wendy Mitchells book, first published in the UK earlier this year Somebody I Used to Know continues to inspire, and has now also been published into Japanese and Spanish. Congratulations Wendy. Many others with dementia have published books about their own experiences of dementia, and many of these authors, and others living with dementia continue to write regular blogs. 

DAI also congratulates Sarah Yeates, our long time and very loyal volunter, who works full time for Caladenia Dementia Care. Sarah has just been made their Chief Executive Officer, a very well deserved recognition of her ongoing committment and excellence.

Peter Berry and Lorayne Burgess from the UK (possibly other DAI members too) have been involved in a BBC documentary, based on proving to the world people with dementia are still employable. We congratulate them on this; as they have strenghened friendships, they have also helped changed attitudes about dementia. We also congratulate Mrs Helen Rochford-Brennan on her appointment as the new Chair of the European Working Group of people With Dementia, and on receiving her Honorary Doctorate from the NUI Galway.

DAI continues to make submissions to governments on our rights, on dementia plans,  on access to the CRPD, and on other matters, as they come up. The LEAD Coalition also makes reggular submissions, which DAI regularly co-signs to help strengthen their voice for change in the USA. The Older Persons Convention is still under review, and we are also working towards ensuring it is aligned to the CRPD, and in which we hope the final draft will reflect this as well as highlight dementia in its own right, as it deserves.

We are very proud to be Founding Members of the newly established Global Rehabilitation Alliance, which was launched in Geneva at the World Health Assembly this year. DAI is now also a formal member of the The Global Alliance for the Rights of Older People, who works with agencies seeking to promote and strengthen the rights of older people. 

The emergence of Dementia Working or Advisory Groups or Committees continues to strengthen; this is a list of the known Groups/Committees:

  • 2000: Dementia Advocacy Support Network International (DASNI)
  • 2002: Scottish Dementia Working Group (SDWG)
  • 2006: Alzheimer’s America Early-Stage Advisory Group (EAG)
  • 2012: Highlands Dementia Working Group (HDWG)
  • 2012: European People with Dementia Working Group (EUPDWG)
  • 2013: Dementia Australia Dementia Advisory Committee (DADAC)
  • 2013: Irish Dementia Working Group (IDWG)
  • 2014: Dementia Alliance International (DAI)
  • 2014: Japan Dementia Working Group (JDWG)
  • 2014: Southern (Kiama) Dementia Advisory Group  (DAG’s)
  • 2014: NZ Dementia Advisory Committee (NZDAC)
  • 2015: Ontario Dementia Advisory Group (ODAG)
  • 2016: Dementia Advocacy Awareness Team (DAAT)
  • 2017: 3 Nations Dementia Working Group (3NDWG)

It is also important to note countries including Taiwan and Singapore are working towards launching their own DWG’s in 2019, and there is a continuing emergence of self-advocates in countries like this primarily due to the work of DAI and also ADI members, now determined to empower and enable the inclusion of people with dementia in their own countries.

Finally, we thank everyone who has sponsored us, or donated to us, as without your generosity, we could not continue to provide the current and new services we provide to our members.

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