Tag Archives: Scottish Dementia Working Group

Introducing Board member Helga Rohra

Vorstand  HR 1 (2)Helga Rohra, our friend and a Dementia Alliance International Board member from Munich Germany was diagnosed with LBD about 8 years ago. She has given us the honour of sharing her story here.

After one year of struggle and hiding because of the stigma connected to dementia there was a big turn in her life.

Meeting strong advocates in dementia at an International Conference of ADI in London 2012 she got a strong belief. She started to stand up and speak up for all of her fellows touched by dementia in Germany. She now remains busy  lecturing about what it feels living with dementia, focusing on the still existing abilities.

Her demand was inclusion from the very beginning after getting diagnosed, and her¬†book (in German and Romanian language) entitled:”Stepping out of the shadow”¬†highlights these demands.¬†Ever since she is also a speaker at Conferences of ADI and AE.

With the foundation of the European Dementia Working Group of people with dementia in 2012 a milestone in dementia history was set as the second Dementia Advisory Group was formed. She is the first Chair of this group. Her home country Germany awarded her in Dec.2014 the Commitment Award on national and international level.

An incentive for Helga for new projects together with dementia friends all over the world.

As dementia, we know no borders and TOGETHER we are strong!

The picture above shows Helga together with great advocates and two other Board Members, Chris Roberts and Agnes Houston at AE Conference in Glasgow/2014.

Thank you Helga for sharing your story.

Editor: Kate Swaffer


Global advocacy of people with dementia

SDWG-run by pwdThe Scottish Dementia Working Group (SDWG) set the foundations as the first working group of people with dementia in the world, run by people with dementia, to advocate nationally and locally on the issues facing us, including policy within their government and Alzheimer’s Society. They were my inspiration to work on giving a voice to people with dementia a voice in Australia, and to being a part of setting up Dementia Alliance International.

It was ground breaking, and others have followed their very impressive lead. The European Dementia Working Group was established in 2012, and the Alzheimer’s Australia Dementia Advisory Group was established in 2013. Ireland have now also set one up, based on the Scottish experience, and other countries are progressing towards their own, some of them finding their voice through their association with the work of DAI.

The global movement of people with dementia having a voice is gaining momentum, and Dementia Alliance International is proud to be part of the movement, and at our Board meeting this week we were very excited to welcome new Board members. DAI has representation on the Board now from the USA, Canada, Australia, Ireland, Scotland and Germany, and our circle of friends covers even more countries. Please join us in welcoming our new Board members;

  • Agnes Houston (Scotland)
  • Helga Rohr (Munich)
  • Chris Roberts (Wales)
  • Leo White (Australia)
  • Scott Russell (USA)
  • Sid Yudowitch (USA)

These are indeed very exciting times for people with dementia, and the catch cry of ‘nothing about us without us’ is now being realised, rather than being ‘just a catch cry’ often previously used by organisations wanting to ‘tick the bosx’ that they had given us a voice…

The¬†SDWG have recently published the Core principles; ‚ÄėCore principles for involving people with dementia in research‚Äô¬† and I urge you to read the publication;¬† you can download it here Core-Principles_SGWG

One of Australian consumer groups, the Alzheimer’s AustraliaConsumer’s Dementia Research Network (CDRN), of which Leo and I are members meets soon, and we will be presenting this to that group. Members of the Alzheimer’s Australia CDRN have talked about publishing a document about our group and the work we do, and this will support that well.

We also want to work with all countries to set up their own DAI group of people with dementia, working alongside of us, but with a shared vision of ensuring people with dementia live well and have an authentic voice in the things that matter to them.

Once again, please join in welcoming our new Board members; their passion and professional experience, along with their previous advocacy efforts will lead to a significant contribution to the members of Dementia Alliance International.

Editor: Kate Swaffer
Copyright: Dementia Alliance International © 2014