Tag Archives: Nothing about us without us

Thank you John Sandblom

Representing DAI in Italy recently, co-founder and Treasurer John Sandblom from the USA gave a brilliant speech on World Alzheimer’s Day in Milan, supported to attend this event with his wife Cindy, by Alzheimer’s Italia. We believe he is the second person diagnosed with dementia to have presented publicly in Italy, and thank one of our pioneer advocates and a DAI Board member, James McKillop for leading the way there, as he presented in Italy in 2004.

“Nothing about us, without us”

DAI nothing without #35CDB0

Day 5 Dementia Awareness Week UK 2015

Vorstand  HR 1 (2)Although there are seven days in a week,  this will be our final blog for this event. As editor, I have tried to highlight some of the DAI and other presentations from ADI2015, as well as some of the issues we face.

The catch phrase, nothing about us without us, has almost become a tick box for organisations, in the same way person centred care is written up in documentation, but rarely delivered. Far too often, they may include one of us, or use the excuse that they tried to get people with dementia involved, but it is to difficult to find anyone with dementia willing to stand up and speak out or be involved.

The road of advocacy and self advocacy is a really tough one, as often, to have become an advocate, you must be part of a marginalised group, and often one that is being discriminated against, or you have to speak out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing they are not doing things well in someone else’s opinion, or perhaps the change you want, does not fir their own agenda or business plan.

There seems little point continuing to discuss many things with some people, as being seen as militant or too direct and forceful is not always helpful. However, if an organisation does not like what the advocates who speak up about, either things like their basic rights, or for change they feel could improve the care of a certain group, or positively impact an issue, then, surely, there might be a need to at least look in the mirror, and be open to full and transparent discussions. I continue to speak out for full and proper inclusion of people with dementia, at every level in every conversation about them.

Unfortunately, many of the advocacy organisations in the dementia sector are not willing to accept their consumer voices as motivators for change, even when, for years, we have been telling them the services provided are not working for us, or there are, in fact, not enough services for us or not the services we want. What is the point of being a consumer advocate, if no-one bothers to listen, or more importantly, accept the criticisms and use to as positive fuel to consider change. I’ve been part of many organisations, either employed or as a volunteer, and it is the ones who are able to accept critique well, that have the greatest impact on the lives of real people.

As the life of Dementia Alliance International (DAI) continues, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems to be the most productive way to be an advocate. On the way, DAI is providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well.

Alzheimer’s Disease International is really listening to us now, and through collaboration with them, in the process, DAI has become the peak body for people with dementia in the world.

It is thrilling to be able to report here that we have been contacted by the Alzheimer’s Society UK to discuss collaborating with them and work together in some way, and I am very much looking forward to meeting with their CEO, Jeremy Hughes, in June this year.

We now all need our own local, state and country advocacy organisations to come on board, and to really listen to us… and do the same. We are not a threat, we merely want to work together.

Working together, we will improve the lives of people with dementia and our families.

It is not acceptable to continue to do anything, about us, without us.

Editor: Kate Swaffer

Copyright: Dementia Alliance International 2015

Ps. I have written on some mildly contentious topics on my own blog this week, including Who am I?, Whose story is it?, Pain vs Suffering, Behaviour Management or Staff Education and Advocacy and activism for people with dementia.

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; ‘Core principles for involving people with dementia in research’  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