Tag Archives: Copyright: Dementia Alliance International © 2014

Getting involved with DAI

Meeting-Clip-ArtEach week Dementia Alliance International has the thrill of new members joining this advocacy and support group, of by and for people with dementia.

As such, we felt it important to focus our blog this week on what services we offer, what we have achieved, and more importantly, how you can become more involved.

We are soon adding a new page on the website called Get involved, with the numerous activities that you can join in, as well as opportunuties to become more actively involved in DAI.

For example, two very new DAI members, Mick Carmody and Gayle Harris, both from Queensland are now regularly co-hosting the new Café Le Brain AUSTRALIA, along with Kate Swaffer.

The next Café Le Brain NORTH AMERICA & UK – Online Memory Cafe in the USA time zone is to be held on and you can register here.

The next online Café Le Brain AUSTRALIA to be held in the Australian time zone now a monthly event is on Wednesday 19 November at 1.30pm AEST. You can register here.

During Dementia Awareness Month 2014, these new Australian members hosted the first Café Le Brain in Australia, which was exciting for DAIs, and I hope exciting for them. Whilst our numbers were low at this first cafe, and there was some confusion about who should register, it was a terrific start.

Celebrating some very good news, we have recently been approached by Alzheimer’s Disease International to collaborate with them as the peak consumer body for people with dementia. We are excited about this opportunity, and thrilled to have their support in this way.

It is especially important for new members, and also for our supporters receiving our weekly blogs and newsletter updates, to see what we have achieved, and I have listed as many as I can remember below.

Since 1 January 2014, we have achieved or are currently working on the following:

  1. Updated website, making it more user friendly and definitely ezasier for peole with dementia to sign up as members.
  2. Our Vision, Values, Missions and Core Beliefs for DAI; of course this may change over time, but we worked hard on these things, and feel they represent what other people with dementia would also want.
  3. Cafe Le Brain, our virtual support groups, now in two time zones.
  4. Active Facebook page, twitter account and YouTube channel.
  5. We are building on the Webinars at A Meeting of The Minds.
  6. We have published a weekly blog since 7 May 2014.
  7. We have a quarterly newsletter, The Advocate.
  8. Membership is in many countries now, and is increasing steadily, and will remain FREE. We need to build on membership in other countries, so they can set up and support new local Alliances for people with dementia in their own countries or regions.
  9. We have an elected Board, although do need more Board members to become more actively involved as a few cannot do all the work on their own.
  10. A memberhsip group of Circle of Friends – members (just a reminder, all people with dementia) who have started meeting to work on projects, e.g. educational resources and material. We love to welcome new members to this group, as well as nominations for teh Circle of Friends and as Board members from those of you who want a more active role in the organisation.
  11. We raised over $6000 in less than five months to sponsor five people to attend ADI2014 in Puerto Rico.
  12. These funds also allowed us to purchase a banner and purchase t-shirts for members and supports, to assist with marketing and fund raising.
  13. Six DAI members presented at ADI2014
  14. We set up and ran a professional stand promoting Dementia Alliance International at ADI2014; this took a huge commitment in time and energy to set up, and to run each day of the conference, but allowed us to highlight not only the abilities of people with dementia, but to network into other countries and organisations.
  15. We hope to raise funds to support people to attend ADI2015 in Perth next year.
  16. Our By Laws are complete.
  17. Our Strategic Plan is almost complete.
  18. Our 501c status as a not for profit organisation based in the USA is now complete: EIN is 27-3538654.
  19. We are in the process of setting up a bank account.
  20. Laura Bowley remains our Executive Director, a person without dementia who provides us with support as a volunteer. Thank you Laura.
  21. We are in the process of setting up a media watch, allowing members to respond to articles in the news, on issues such as the use of inappropriate language.
  22. We ran a very full Dementia Awareness Month program of activities, whoich were very successful. We included four Master Classes, and a Webinar being run in two time zones, as well as our regular Memory Cafés and weekly blog series.
  23. Our newsletter and many other articles have been translated into Spanish, French, Mexican, Japanese, and Bangladesh, and we are currently working with other countries including Taipei, Germany and Croatia.

Looking ahead, we are currently collaborating with others to set up some very exciting projects, as we develop our skill sets and commitment to the fact we can still function, albeit differently to the way we did before being diagnosed with dementia.

We will be adding resources and finding funding, and will achieve our current goals and beyond. We are also collaborating with a number of academics and universities to provide two subjects for universities to incorporate into their dementia courses.

We also are soon to commence work on providing two global resources, available to be downloaded on our website, the first being Communicating with people with dementia, the second being a Language Guidelines document, and intend to get them translated into at least the countries who have Alzheimer’s Associations or Societies.

Until then, you can download the Alzheimer’s Australia guidelines here> Alzheimers Australia Language Guidelines 2014

DAI in Dementia Awareness Month 2014

DAI Master Class logoSeptember is World Dementia Awareness Month and because we know our members have a lot to contribute to the learning of dementia, during September DAI is holding a number of Master Classes and other events.

Master Classes: learning to live well with dementia

During September 2014, DAI is offering the following Master Classes for people living with dementia, taught by people with dementia. The focus of the Master Classes is on learning to live well with dementia.

Master Classes are offered over the Internet using video conferencing, and can be attended from your home, office, or can be set up and shown to groups. They are free to attend (ticket purchases by donations are welcome):

The classes and dates are as follows. For class times, descriptions and to register, click on the link provided after the class title. Australians, add a day to the following dates.

Café le Brain

  • September 16: Guest host is Teresa Zawicki

Webinar:

TOPIC: Dispelling the Myths of Dementia

Everyone knows about dementia, but few understand it. In this webinar we will talk about the popular myths of dementia, the research into dementia as it stands now regarding causes and prevention, the different types of dementia, and about the positive things that are happening regarding living well with dementia. Participants will be able to ask questions of the panel, which will be comprised entirely of people with dementia.

TWO TIMES FOR THIS WEBINAR:

  •  Northern Hemisphere: Tuesday, September 23 – 10 am, PT, 12 noon CT, 1 pm ET, 6 pm UK
  • Southern Hemisphere: Friday, 26 September – 11am (Adelaide time) – to be confirmed.

Here is a summary of the programs and events being offered during Dementia Awareness Mnth 2014 by DAI:

  • Master Classes: Four weekly classes on living well with dementia – for people with dementia, taught by people with dementia
  • A Meeting of the Minds webinar: Tuesday, September 23 – Dispelling the Myths of Dementia – times to be announced
  • Café Le Brain Memory Café: Tuesday, September 16 – Guest host is Teresa Zawicki

To learn more about these events and to register for the Master Classes, which start on Wednesday, September 3, please go to: http://www.dementiaallianceinternational.org/events/

 

Dementia in the media

Source: Google Images
Source: Google Images

As the editor of an international advocacy and support group, of by and for people with dementia, I read or am referred to many articles in the media about dementia. Most of them require a comment from people living with dementia, in order to either re-claim our human rights, to request the same respect offered to everyone else in the community, or to complain about either the misconceptions and myths the articles portray, due to the ignorance of those without dementia, or the biases and prejudices of a few.

The media feels like a an ugly place to be these days, as we are regularly being referred to as sufferers, victims, demented, not all there, fading away, or in this disgraceful instance, we have dementia as a form of punishment for our sins. Read this article, by a radical and obviously extremely prejudiced woman named Suzanne Atanus, a Republican candidate for U.S. House of Representatives in Illinois, who claims autism and dementia are God’s punishment for abortion and LGBT rights; GOP candidate claims autism and dementia are God’s punishment. It is outrageous!

A few months ago a journalist called Rose George balked at being told I found the use of the term sufferer offensive; she used it in the title of an article she wrote for The Guardian, also partly about her personal story of supporting her own mother who had dementia. After a number of tweets about being offended by the public use of this term, she ultimately tweeted back that I had no right to ask for it to not be used. Once I referred her to the International Dementia Language Guidelines, she would not engage with me.  Some people with dementia do not mind being referred to as sufferers, but many of us find it not only offensive, but de-meaning, de-valuing and disrespectful, and we do have a right to for it not to be used publicly.

We believe that if it is in the public domain, and a group of people find a word, words or terms offensive, then we do have the right to ask others to stop using it, in the same way we – and they – would NEVER refer to someone with an intellectual or physical disability as a retard or retarded any more. Not because they are not retarded, as technically they are, but because this group find its offensive. I often call myself retarded to make a point, and people are horrified I would refer to myself that way, and often, these same people are often aggressive in their right to offend me and other people living with dementia by calling us demented or sufferers.

Joseph Curl wrote on Sunday, July 20, 2014, CURL: The politics of death and dying, for The Washington Times. It is obvious he is sharing his personal story and very raw emotions of his mother’s dementia, but it portrayed people living with dementia as ALL deficient, all ‘suffering’, all incapable of living any sort of a good life, and all completely unable to make decisions for themselves. In no way did it allude to the millions of people living well with dementia, who are still positive and leadinging meaningful and engaged lives, many of them in the community, still achieveing remarkable things.

This author’s personal perspectives and wording were then carried over to another article in the examiner.com Dementia: Drudge Report editor foresees death politics on the horizon that compounded the negatives, the errors, the stereotype that then increased the potential for prolonged stigma. Of course, if a journalist is expressing personal opinions, they or the editor may not think it relevant to consider the international dementia language guidelines. I still say, if they would not use the word retarded, they should also not use the word sufferer, in the public domain.

I have written extensively a number of times about language and dementia, including saying this; “Does ‘I am suffering from… dementia, arthritis, cancer, MS etc’ sound more negative and less empowering than ‘I am diagnosed with…’? Whilst the term suffering may technically be ‘correct’, I cannot see how anyone could not see it is not negative and disempowering.”

In  article The cheating language of equality, he wrote when referring to me, “Like so many others she [Kate] believes that you can change the world by changing language, a fallacy that is everywhere hobbling radical movements. If accuracy is sacrificed, they say, if basic descriptions such as “mentally ill” and “sufferer” are forbidden, if readers and listeners get lost and woolliness is held up as a model to writers and speakers, so be it. Waffle will lead us to a better future.”  Waffle may not lead us to a better future, but I and we have the right to say if something offends us.

In another blog on Language, dementia and respect I referred to an MP in Adelaide, Kelly Vincent, who campains extensively in the disAbility sector, and is the political leader of Dignity4Disability. She says; “The way we ‘label’ or talk about clients can say a lot about what we think about them” . The C-word campaign is about person centred care and respectful communication, and about the rights of people in a specific sectors – e.g. disAbility, aged care, or dementia, and for them to have a say about what is appropriate language. Dignity4Disability’s C-Word Campaign has these principles as a philosophy. These principles apply equally to people with dementia.

We [people with dementia] are not, “not all there”, we are still here, and we still have feelings and opinions and rights. Some of us may suffer from dementia or other diseases some of the time, but that does not necessarily make us sufferers.

Sadly, I could have referred to literally hundreds of articles that devalue and disrespect us; this is where continued advocacy and communications from people with dementia becomes really important. We must keep sending out our messages, subtle or not so subtle, depending on the receptiveness of the people, person or organisation we are trying to educate.  We must be alert for the opportunities to correct, to educate, and to change perspectives.  This may not be done overnight, but we must keep trying to improve the awareness and reality of dementia, including the good, not just the bad, and to stand up for our basic rights.

The media spoon feeds the public, and has a responsibility to feed it the truth, with respect for all of those it portrays.

This includes people with dementia.

If people are publishing anything, or speaking in a public forum, it is imperative they refer to the international dementia language guidelines, which will be added to our site in the near future.

For now, I have added Alzheimer’s Disease International’s guidelines for the preferred terms for their conference speakers, next to the terms they advise submitters not to use when referring to a person with dementia or their family/friend support person:

Dementia/a form or type of dementia/symptoms of dementia – NOT – Dementing illness, Demented, Affliction, Senile dementia, Senility

Younger onset dementia – NOT – Early onset dementia when referring to someone under the age of 65

Person living with dementia, diagnosed with dementia – NOT – Sufferer, Suffering, Sufferers, Demented sufferers, Vacant dement, Victim, Demented person, Patient, Subject, Case

Family member/s or person supporting someone living with dementia, Wife/husband, child, friend – SUGGESTED – Care partner

Disabling, challenging, life changing, stressful – NOT – Hopeless, Unbearable, Impossible, Tragic, Devastating, Painful, Distressing, Fading away, Empty shell, Not all there, Disappearing, Stealing them away (they are always still there), The longest goodbye

Impact/effect of supporting someone with dementia – NOT – Carer burden, Burden of caring

BPSD, changed behaviour, challenging or difficult communication – NOT – aggressive, wanderer, poor feeder, wetter or incontinent, obstructive, non–communicator, attention-seekers, non-communicators, obstructive, etc.

Editor: Kate Swaffer
Copyright: Dementia Alliance International 2014

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