Tag Archives: Copyright: Dementia Alliance International © 2015

Wishing you all a happy and safe festive season

 

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The Board of Dementia Alliance International wishes our members and supporters a happy and safe festive season, and we very much look forward to seeing you online or in person somewhere in 2016.

It is the festive season for many, and we take this opportunity to wish you all a wonderful time with your families and friends, and hope you stay safe.

It is worth remembering, it is not always a joyous time for everyone, so be kind and gentle on yourselves, and with each other.

Living with dementia: new perspectives

Our blog today also follows the email we sent inviting you to attend the Webinar, A Meeting of The Minds – Living with dementia: new perspectives –  with Dr Al Power in January 2016.

You can register for it here…

Happy 2nd Birthday

Two weeks before the event with Dr Power, we will celebrate our 2nd birthday with an online global celebration, and you will receive an Zoom meeting link early in the New Year.

Keep the date free: Wednesday January 13 / Thursday January 14, 2016 (USA/AU)

It will be a fun and exciting time, and we have much to celebrate. Perhaps the best thing to celebrate is the fact we are growing from strength to strength, with membership, and a louder global voice.

There were (perhaps still are) many doubters that people with dementia could set up and run their own group, including providing FREE membership and FREE services top others with dementia, all done with very little funding. Be proud . We certainly are.

Wear a hat, make a cake, do what ever you feel will make it fun for you.

If you live in the same town or area as other members, get together on the day, and join in as a group. Join forces with other DAI members in person. Have fun, and keep making a difference to not only you down life, but to the lives of others.

Our new Board of Directors

We will introduce our new Board of Directors early in the new year, and look forward to a very exciting year for people with dementia globally as we move towards a world where there really is “Nothing about us, without us.”

Please note:

There will be no Board meeting or Members Open meeting in January 2016, but instead a shared  celebration and an opportunity to meet the new Board members. All formal meetings like this will resume in February.

Best wishes from the 2015 outgoing and 2016 incoming Board members of Dementia Alliance International.

Chair and Editor: Kate Swaffer

From lab to home: AD in the 21st Century

 

Screen Shot 2015-11-21 at 5.17.04 pmThe last three days I have been representing Dementia Alliance International at an ADI Regional meeting and Philippine Neurology Association conference in Manila. In fact, getting here at all was a major challenge, as due to the terrorist attacks in Paris, and Mr Obama and other heads of countries being here for APEC, security was really increased, and the airport cancelled for all flights for over 12 hours, of course, on the day I was to depart from home. On top of that, there have been bushfires and a heatwave back home, with catastrophic bush fire warnings, and we have been unable to go home earlier than we initially booked!

Anyway, the hospitality in Manila has been exceptional, and the friendliness and hospitality of the people here truly spectacular. The dinner last night was a highlight, with all regions of the country putting on a performance, including the neurologists and other medical doctors. It was extremely competitive, and very entertaining.

The conference itself was perhaps more for neurologists, as it was hosted by the Philippine Neurology Association, and many of the speakers presented the scientific data and pharmaceutical side to dementia, but it was an important step for DAI to be represented here, and especially to encourage them to include people with dementia in their programs in the future.

After the Dementia Friendly Communities session today, which I presented at along with five other presenters from the region, including Japan who started this movement about 20 years ago, it was enlightening, and we all learnt a lot from each other.

The thing I am most pleased about, is that DAI will be able to support people with dementia in the countries represented here, such as India, Indonesia, Hong Kong and Singapore, and though this channel of support for each others work, we can give a stronger more global voice to people with dementia.  We have had our first support group, for people with dementia in Nigeria, and I foresee there will be many more to follow all over the world. Mick Carmody, our support group facilitator and host and also a fabulous chap and poet, will certainly have a lot to get him our of bed every single morning!!

There has been a lot to take in, and it has been very tiring, but I will write up a full report especially on the DFC session today, for another blog.

Editor: Kate Swaffer

Copyright: Dementia Alliance International 2015

 

Dementia: Language and the media #DAM2015 Day 25

Source: googleimages.com
Source: googleimages.com

Yet again, during another World Alzheimer’s Month, we have been blitzed by articles and stories in the print, radio and print media about dementia, many of them negative, stigmatising and demeaning, and focused on our deficits.

Yet again, many of the stories in the media have been of or by family care partners, researchers or health care professionals, taking about people with dementia, when the people who should be interviewed, are the people living with dementia themselves.

On World Alzheimer’s Day, the media should have been flooded with people with dementia, not people without dementia.

Sadly, it continues, far too often, to be “about us, without us”?

Yet again, people with dementia have been offended and insulted by the continuing use of terms like ‘dementia sufferer’, ‘suffering from dementia’, or being called ‘demented”. They would not call us retarded, we are 100% sure of that!

Yes, this happens even when the person being interviewed or who has set up the interview, has specifically asked the journalist NOT to use those terms.

I attended an event this week, where the journalist who was the MC, was given the dementia language guidelines ahead of the event, but still called us sufferers. When I spoke to her afterwards, she claimed she didn’t know about the guidelines. This is an all too common experience!

The journalists I know personally or have had online discussions with, all proclaim they are professional, yet far too many simply refuse to do the research about, and then actually bother to use, respectful dementia language.

As our advocacy organisations are pushing globally for dementia friendly communities, and using the media in part to promote these campaigns, the time is NOW, that everyone starts using respectful language.

These organisations must also insist the dementia language guidelines are referred to including in-house, if they really are advocating for people with dementia…

No-one can claim to be dementia friendly, if they continue to use language that disrespects the majority of us.

DAI wrote a blog about dementia and the media last year and other people with dementia have been writing about language this month as well.

One of our members who also blogs regularly, Wendy Mitchell in the UK wrote about the importance of language recently, worth reading.

Advocacy organisations all over the world are publishing their own dementia language guidelines. Let’s hope they use them…

Oddly, Dementia language guidelines have been in existence since as far back as 2008, and yet, the media, the public, the health care sector, researchers, and the organisations who say they advocate for us, are still mostly, not using them…

The most comprehensive guidelines are downloadable here:

Alzheimers Australia Language Guidelines 2014

 

Editor: Kate Swaffer
Copyright: Dementia Alliance International 2015

Dementia friendly: who is doing it well? #DAM2015 Day 14

Screen Shot 2015-09-14 at 9.52.31 amFor Day 14 of Dementia Awareness Month 2015, it seemed important to talk about the dementia friendly communities initiatives going on around the world. Being dementia friendly is less about being ‘friendly’ – we should all be friendly and kind – and more more about:

    • Human rights
    • Respect
    • Non discrimination
    • Full inclusion
    • Our right to citizenship
    • Autonomy
    • Equality
    • Equity
    • Access
    • Dementia Enabling Environments
    • Support for disAbilities

Becoming dementia friendly is not rocket science, and to begin with, organisations who are promoting the dementia friends messages and campaigns, need to start within, so that they too, are actually walking their own talk.

The only community that DAI knows of, authentically working on their own community becoming dementia friendly, is the Kiama Municipal Council, south of Sydney.

You can read it in full on their website, but why they are unique, is due to their willingness and commitment to set up a Local Dementia Advisory Group, made up of people with dementia and their support partners if needed.

The Kiama Dementia Friendly Communities Pilot Project:

The project partners, together with people living with dementia and their supporters, as well as interested members of the Kiama community, developed the Kiama Dementia Action Plan in 2015. The plan was informed by people living with dementia in Kiama via research undertaken by the University of Wollongong (see below).

Two local groups formed to develop and implement the Action Plan.

  • The Dementia Alliance includes people with dementia and their supporters, and relevant stakeholders (e.g. members from Kiama council, transport services, and aged services)
  • The Dementia Advisory group which is made up exclusively of people with dementia and their supporters. They will oversee the activities of the Dementia Alliance, as well as develop their own activities.

Go to the DEMENTIA Illawarra Shoalhaven website for their full article on their efforts towards becoming dementia friendly. It is admirable, and we, people with dementia, are waiting for the rest of the world to catch up by setting up their own Local Dementia Advisory Groups in their own DFC projects and initiatives.

Without that, this work continues to be, mostly, “about us, without us.”

Editor: Kate Swaffer
Copyright: Dementia Alliance International 2015

Tribute to Richard Taylor PhD

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Please join us in remembering Richard, in an online memorial for Dementia Alliance International members and all others who knew him, loved him, or whose lives were impacted by him in some way.

His reach was global, and his legacy will be carried on.

This is YOUR opportunity to share how he changed your life, your experience of living with dementia, or your experience of caring for someone with dementia. We have a very big set of shoes to fill.

Register here…

DATE:
Wednesday, August 19, 2015 (USA, Canada, UK, Europe) and Thursday, August 20, 2015 (Australia, NZ)

GUEST SPEAKERS:
Mr Glenn Rees, AM, Chair, Alzheimer’s Disease International
Dr Al Power, Geriatrician, author, educator
More to be announced.

Richard Taylor PhD was a founding member of Dementia Alliance International, and has been an advocate and global voice for people with dementia for more than ten years. Sadly, Richard passed away at his home on July 25th, due to cancer.

Richard was 58 years old when he was diagnosed with dementia, probably of the Alzheimer’s type. He always began his videos and presentations with: “Hello. My name is Richard, and I have dementia, probably of the Alzheimer’s type.” “Hello” is such a simple word, but it in some ways it epitomized Richard, as his focus was on our continued humanity, especially that of people with dementia, and not on our deficits.

The members of DAI send their deepest sympathy to his family and close friends, and we hope they know how much he was loved and will continue to positively influence the dementia community.

This Tribute to Richard is your opportunity to remember Richard amongst others who also loved him.

There will be a number of speakers, including Dr Al Power paying their respects to Richard, followed by the opportunity for you to express in your own words (max 2 minutes), the influence Richard had on your life.

Start Time:

North America, UK and Europe: Wednesday, August 19
3:30 p.m. Pacific Time (San Francisco) and Arizona (Phoenix);
3:30 p.m. Mountain Time;
4:30 p.m. Central Time;
5:30 p.m. Eastern Time;
10:30 p.m. in the UK;
11:30 p.m. in Paris and Budapest

Australia, New Zealand, Indonesia, Japan: Wednesday, August 20
7:00 a.m. Adelaide;
7:30 a.m. Brisbane;
4:30 a.m. Jakarta;
9:30 a.m. Auckland;
6:30 a.m. Tokyo

The Tribute to Richard will run for two hours.

Register here…

You will receive an email confirmation that contains instructions on how to join the event.

Please note: Unfortunately, we have had some IT issues with Eventbrite sending out incorrect dates and times to some people, so please, refer to the times listed here.

Belated update

Screen Shot 2015-07-28 at 10.18.21 amHello.

This month, as Editor of DAI, it has not been physically possible to keep up with the many commitments I have had in this group, and many others, so I would like to apologise for missing three weekly blogs.

What we can’t do alone, we can do together, but there simply have not been enough helpers to ensure even the basics of our organisation happen this month.

Tribute to Richard Taylor

The passing of Dr Richard Taylor, one of our founding members, and a long time advocate and activist for improving the lived experience of dementia, has also take its toll on our members, and the global dementia community, and to help members, Laura Bowley provided a Zoom chat room on Tuesday; thank you Laura for doing this, it was a good opportunity for people to share their grief.  DAI also continued with Richard’s Thursday support group to allow people to express their feelings and talk about their own memories of Richard.

Keep this date free:

  • August 19 (USA/Ca/UK/EU)
  • August 20 (AU/NZ/Japan/Indonesia)

DAI will be holding a Tribute to Richard Taylor event as part of our A Meeting of The Minds Webinar series.

Details including times will be sent out ASAP.

July 2015 Member update

As far a a July Members update, we were unable to hold the Open Members meeting in July, and I have not written a report to publish here, but suffice to say, there is actually little to report, and so we will provide a two month update at our Open Members meeting in the third Tuesday/Wednesday of August.

Again, our apologies and we hope to see you at the August Open Member to give you an  update, and to hear your views. I’ve not even had time to write up the survey results either, but hope to have that done by this update as well.

Thank you for supporting Dementia Alliance International.

Kind regards,
Kate Swaffer
Chair, Editor, Co-founder

What is dementia friendly?

Screen Shot 2015-07-05 at 4.51.01 pmThe Alzheimer’s Society UK’s Dementia Friends programme is:

“The biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, acts and talks about the condition.

Whether you attend a face-to-face Information Session or watch the online video, Dementia Friends is about learning more about dementia and the small ways you can help. From telling friends about the Dementia Friends programme to visiting someone you know living with dementia, every action counts.”

Small actions do count and everyone can make a big difference.

With incredible generosity, their CEO Mr Jeremy Hughes has made this programme available, free of charge, to any Alzheimer’s organisation who wishes to support the dementia friendly work in their country.

It is a wonderful initiative, and it is leading the field, and is making a difference to the lives of people with dementia and their families, friends and supporters.

Being dementia friendly means more than being friendly

From the perspective of people living with a diagnosis of dementia, it is less about being friendly, and so much more than awareness of what dementia is.

It is so much more than professionals and interested others (without dementia) working together to make OUR community more friendly and accessible.

It is more about;

  • Respect
  • Human rights
  • Non discrimination
  • Full inclusion
  • Our right to citizenship
  • Autonomy
  • Equality
  • Equity
  • Access
  • Dementia Enabling Environments
  • Support for disAbilities

Being dementia friendly means including us.

By not including us, the stigma, discrimination, myths of dementia and isolation are continued, and often, by the very organisations and service providers claiming to advocate for us.

Not one or two of us, but a lot of us, and this is why:

  • People without dementia cannot really know what it means to live with dementia; we are the experts of the lived experience
  • People with dementia can inform people without dementia on what it actually means [to us] to be dementia friendly
  • So that is is no longer ‘about us, without us’. This has become a catch phrase, a tick box for organisations, in the same way person centred care is in care plans, but not in action

The dementia friends campaigns being run by advocacy and other organisations need to educate, not just raise awareness.

They need to be respectful and empowering to people with dementia, and very importantly, they need to promote, and use, respectful and empowering language.

If they engage with the media, and ask people with dementia to engage with the media, they must insist on the language being used to be aligned with the most recently updated dementia language guidelines, which can be found here, and without using them, the media, and the organisation, will never be dementia friendly.

Dementia Friends campaigns must never focus on our deficits

If our deficits are what are focussed on, then we will never transform the way the nation thinks, acts and talks about the condition. 

Therefore, Dementia Friends campaigns, campaign material, and campaign media, must never focus on our deficits.

Our disAbilities need to be fully supported, and employing us to work on the dementia friends initiatives is also important. After all, if we were setting up a disAbled friendly community, we would employ people with disAbilities, who really know what it means to be disabled, and what would support them to live in their community independently.

Any organisation, wanting to work on something new, would contract or employ experts.

People with dementia are the experts of the lived experience, and would [and should] significantly and positively impact this work.

In reality, especially in the earlier stages, people with dementia are simply living with disAbilities, that can be supported, in the early stages of the disease. Yes, it is a terminal illness, and yes, it may not be a fun experience all of the time, but it is possible to live much better, for much longer than the expectations and perceptions.

We still have a lot to contribute to society, and our own lives.

As suggested in a recent blog, there are many groups of people working on their own Dementia Friends campaign, excited about what they might be able to achieve, how they might be able to improve the lives of people with dementia and our families, and talking about ways to support us better to live well, and to live in our communities for longer.

Alzheimer’s Disease International have a  Global Charter I Can Live Well with Dementia. Everyone must start including us in this work, it is personal, and not including  us simply means we have less change of ever achieving this goal.

If it’s about us without us, it is not dementia friendly. 

Dementia Alliance International has representation in more than ten countries, which means we can ask members to assist in this work at a global and at some local levels, but we don’t reach all regions.

Therefore, each Alzheimer’s advocacy organisation and Dementia Friends Working Group needs to set up and support their own Dementia Advisory Group, to properly guide, lead and inform the work being done.

What’s missing in the Dementia Friends campaigns?

Some key things  currently missing in the dementia friendly communities work and campaigns are;

  1. Each country, each city, each community working on becoming dementia friendly, must set up their local/regional/city/country Dementia Working/Advisory Group. This is because every single community is different, and because the work must be led by people with dementia, not as it is now, which is by people without dementia.
  2. To be dementia friendly themselves, advocacy organisations must start employing or contracting people with dementia, or an organisation like DAI, to work on their dementia friends campaigns. People with dementia should be treated with the same respect any other consultant is, and paid for the expertise.
  3. They must also themselves, be audited on whether they are operating within their [which should be our] dementia friendly guidelines, and being audited by people with dementia is the first place to start.

Join the global Dementia Friends movement

We ask that everyone join the global Dementia Friends movement, start your own local, regional, city or country Dementia Friends campaign, and support people with dementia, but please, always fully include us in this work.

Each country, each community, needs it’s own Dementia Advisory/Working Group of people with dementia, to lead, guide, and properly inform this work.

And finally, it should not be a marketing tool for organisations to promote themselves, which is what person centred care very quickly became.

Copyright: Dementia Alliance International 2015

Dementia Beyond Disease: Enhancing Well-Being

Last week DAI members and others were privileged to have Dr Allan Power present a session, Dementia Beyond Disease: Enhancing Well-Being as part of our A Meeting of the Minds Webinar series. Thank you Al, your effort, and deep commitment to improving the lives of people with dementia is appreciated.

Dr Allen Power is an internist, geriatrician, and clinical associate professor of medicine at the University of Rochester, New York, and is an international educator on transformational models of elder care, particularly for those with changing cognitive abilities. Dr. Power is the author of two books, Dementia Beyond Drugs, and the newly released Dementia Beyond Disease. He has served as an advisor and educator for the US government for their antipsychotic reduction initiative. Dr. Power is also a board member and educator for The Eden Alternative, the world’s largest culture change movement for elder care.

You will find his presentation enlightening, and hopefully, if you work in dementia care, culture changing.

Dementia Alliance International (DAI) is a non-profit group of people with dementia from around the world that seeks to represent, support, and educate others living with the disease, and an organisation that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

See the recording of his session here. Apologies it has not been edited to improve the quality.

Dementia Beyond Disease: Enhancing Well-Being

We will post his power point slides here as soon as possible but due to my current poor internet connection, they won’t download here!

For those who want to follow Dr Power’s schedule, see his website here http://www.alpower.net/gallenpower_schedule.htm

Membership of Dementia Alliance International is free, and is exclusive to those with a medically confirmed diagnosis of a dementia. Join us at http://www.joindai.org

If you do not have a diagnosis of dementia, but are interested in our work, you can subscribe to our weekly blog or visit us at www.infodai.org

As an unfunded advocacy and support group for people with dementia, we appreciate all donations, and are thrilled to have received one following this last webinar. Thank you.

Open members Meeting Notes: June 2015

Screen Shot 2015-10-28 at 6.54.05 amDuring the week, we held our first Open Members Meeting, with about ten members present. Due to some IT challenges, it was a difficult meeting for us all to hear each other, and I kept being cut off, so as the host, it was less than perfect!

Although this open members meeting it is a change from the system we first started in 2014 where we had open Board meetings, I truly believe it will give our members a better chance of having your say, and will impact more positively on the way you want DAI to exist. The method of being part of the Board meeting, with no real voice, and no voting rights, for many, did not allow you to have a voice at all, because, as with all groups, there are those with stronger voices who sometimes speak at the cost of others. That is never intentional, and may also happen in this forum, but we are really hoping we can give you a stronger voice. If it does not work out to be a better system, we will review it with you, as we will always work towards improving our methods and services.

We welcomed everyone and thanked them for making the time to join us. I cannot easily express how important it is and how much it means personally to me that members made the effort to attend this meeting, because after all, we are only existing because of our desire to support and advocate for people with dementia.

DAI needs your voice.

I had wanted to start with power point slides but the iPad I was limited to using did not support this, or, I did not know how to work that on an iPad!!!

We went over the meeting guidelines and protocols,  and did not record the meeting, so I hope we can manage to report it here now! If I fail in this, we may need to record it next time. To those of you present, please let me know.

The main guidelines or protocol for the meeting is that we do not interrupt someone when they are speaking, and we ask members to please indicate when they wish to speak, rather than talk over someone else. Nothing complicated at all.

As there had been some significant news since the Board meeting was I held, I began the meeting with a newsflash.

Newsflash

Since the last Board meeting, we have had two people resign from the Board. Janet Ford (nee Pitts) resigned for personal reasons, and Sid Yidowitch resigned mainly due to changes in his health.

Representing the DAI membership and Board, I would like to thank them both for their incredible passion and commitment to the group, especially Jan as a co-founder who has also been a co-chair for almost 18 months, and who represented us so well in Geneva in May. They have both worked hard and represented people with dementia well, advocating strongly for us all.

Updates from Board meetings:

May Board meeting

It was decided in May that in line with our DAI vision and mission, and with what it clearly states on our website and all documentation, that membership of DAI must be exclusive to people with a medically confirmed diagnosis of dementia, and we can not accept members without this, therefore MCI is not sufficient to be a member. This has meant we have lost at least one member, whom we will always welcome back if a diagnosis of dementia is ever confirmed. However, the rationale is that, we do not want DAI to be taken over by people without dementia as happened with DASNI. And for example, as MCI does not always lead onto a dementia, it is not appropriate therefore, to break the membership criteria.

Getting a medically confirmed diagnosis is incredibly difficult for almost everyone, and we realise there needs to be a support group set up to support this group, but it is not currently the mandate of DAI; we barely have funds to operate for members who have a confirmed dementia.

June Board Meeting

In June we held the first closed Board meeting, and we reported the following to members, directly from the minutes from that meeting;

1. ADI has agreed to make a donation to DAI of £1000, based partly on some donations made at the conference in Perth, and partly because I did not claim my speakers travel bursary allowance. This will ensure our running costs are covered for the year, allowing us to continue to fund the Zoom meetings, support groups and other events.

2. We had been asked to provide a work plan for the next fiscal year to ADI, and after much discussion agreed to start with the following:

Three publications:
• Consumer Empowerment
• Communicating with PWD
• I’ve just been diagnosed: What next?

We still need to determine conference attendances, but we believe ADI2017 and WHO meetings on dementia are a ‘must attend’ for as many members as we can find funding for.

3. Jan had reported on the WHO assembly she attended saying it was an excellent conference. One if the highlights meeting the Ambassador of the UN on human rights, and hearing about their focus on lower and middle class countries; language barriers discussed; Jan discussed DAI, past current and present. Speech went over well, very receptive re rehabilitation and individualised person centred plan to keep people in the community; in the same way as has happened in the disability sector.

4. I gave an update on members survey – it was decided 10 questions should be the limit, as more than that may be too difficult for us to complete, and also more than 10 would mean we had to pay a service fee. A few members trialled the draft survey I initially set up, and found it reasonably easy to do. Kate and John sent it to our members. Whilst the survey was not perfect, in part due to being limited to a FREE one, we have received feedback for a significant number of members, and after another 2-3 weeks, I will evaluate and report on it. It will be open a little longer, if you still wish to send in your thoughts.

5. DAI is a member of Global Alzheimer’s and Dementia Action Alliance, although there was nothing to update as we still do not have the minutes from the first face to face meeting held in Geneva in March. We are also a member of LEAD, although again there was little report.

Finally, we spoke about the Dementia Friends Canada campaign video 

Many who have seen this believe it has taken our advocacy efforts back 30 years, and that potentially it increases stigma, discrimination and FEAR. It stereotypes us indicating ALL people have the same symptoms, and focuses ONLY ON OUR DEFICITS.

If you haven’t seen it, and wish to send your feedback or comment in any way, here is the link.

In no way does it line up with ADI’s global charter of living well with dementia.

Some feedback we received said: “it should be a video to explain what the Dementia Friends initiative is and how one becomes a Dementia Friend and perhaps some examples of how someone in the community who is living with dementia might be assisted, not a video that, if I didn’t already know so many people with dementia, I’d be more afraid of someone with dementia than ever!!! The fact that all one has to do to become a “friend” is watch that dumb video is appalling.”

Many of us agree with these comments. The Board has also agreed to send a formal letter to Alzheimer’s Canada.

Please note: Since the open members meeting, I have had a conversation with their CEO who has explained their rationale for it.  That is not to say we will support it, but we do need to thoughtfully and properly respond. I did suggest our members could be a resource for Alzheimer’s Canada i the future, and hope we are taken up on this offer.

Members open discussion

After I was cut off from the meeting, Susan Grant hosted it it was a good discussion where everyone introduced themselves more personally, talking about how long diagnosed and of what their passion was in campaigning and how this could assist DAI.  Members present talked more about why they joined DAI and how they would like to contribute. Everyone was keen to share e mails and face book accounts.

The meeting finished around 22:40pm, and everyone appeared happy energised and ready to assist the DAI BOARD in any way they could.
Thank you for attending, and please, if you were not able to make this one, bring yourselves and your voice to the July Open Members meeting.
Kate Swaffer, Editor and Co-chair
Copyright: Dementia Alliance International 2015

 

John Sandblom presents as ADI2015

Slide01Co-founder and current Treasurer of Dementia Alliance International, and past co-chair (2014), John Sandblom presented on behalf of our membership at ADI2015 in Perth recently.

The presentation presented by John Sandblom titled Finding Our Voice was accepted for oral presentation was written by John, and co-chairs Janet Pitts and Kate Swaffer,  was well received, and very timely. John has given us permission to add the slides and notes from his speech, although unfortunately, no-one managed to record it, so we cannot upload a video of it. Thanks John, you did an excellent professional job or representing our members and organisation.

Abstract:

This presentation will review the first year of a global advocacy and support group, of, by and for people with dementia called Dementia Alliance International. Our vision, “A world where a person with dementia continues to be fully valued” is being realised, as more people with dementia connect around the world, and speak up for their basic human rights. We speak up for full inclusion and a place at the international dementia table; as people with dementia we believe that without full inclusion at the conversations about the very things that affect our lives and futures is imperative. The stigma, discrimination, prejudice, myths of dementia and isolation are simply being exacerbated, by the organisatons or researchers purporting to improve our lives or advocate for us, without us. We will discuss the technology being used to support our work, allowing us to progress rapidly as an organisation with no funding, and with representation from a number of countries. We will also review the Master Classes run during Dementia Awareness Month 2014, and the value of the sharing of the lived experience of dementia. Finally, we will discuss how collaboration has been the key to our success, as well as allowing us to support the work of other people with dementia in individual countries such as the Scottish, European, Australian, Irish and Japanese Dementia Working Groups, rather than work against each other or in isolation. In its first year, DAI has become the peak advocacy body, supported by ADI, of by and for people with dementia.

Presentation slides and notes:

Slides: Finding Our Voice_John Sandblom_ADI2015

Notes: John’s personal introduction including diagnosis and current position with Dementia Alliance International and including his role as a founding member.

Please note: The content of this presentation and our website represents our opinions (however well-informed they may or may not be) and should NOT to be considered medical advice, it is not medical advice. Medical advice should only be obtained during conversations with your own medical doctor.

DAI started as a dream by many people with dementia, all of the founding members having varying versions of that dream, but it was driven by the desire for change, and the desire to increase awareness, education and most importantly, connecting with others people living with dementia all over the world. It is about people with dementia finding their voice, and being fully included.

Our vision is “A world where a person with dementia continue to be fully valued.”

Through empowering members to work on projects, speak out, and get involved in support groups, we believe the value of improving the quality of life for people with dementia is tremendous, and often life altering. Even when people are no longer employed, they can still be meaningfully involved and contribute to society.

People with dementia have an indescribable instant bond, perhaps because we are at great ease with one another, but mostly because you know the other person knows what it is to live with dementia, not questions necessary. Many people doing advocacy work on their own have now joined to work together with other DAI members.

What we can’t do alone, we can do together.

Through strong advocacy, we have collaborated with ADI, and are now the peak body globally representing people with dementia. Whilst we are an advocacy and support group, of, by and for people with dementia, with no ongoing funding, and some voluntary administration and other support, we still need to work towards finding regular funding, and finding volunteers willing to support our work.

All organisations require funding and manpower support, and Dementia Alliance International is no different.

We speak up for full inclusion and a place at every international dementia table… Nothing about is without us.

In finding our voices, we are continuing with the mission of DASNI and The Scottish Dementia Working Group, whose mantra was NOTHING ABOUT US WITHOUT US: Full inclusion will help to improve the lives of people with dementia, and reduce stigma, discrimination and isolation.

Like everyone else, we make mistakes and we may not be able to function at the same level as people without dementia, however that is no reason to no include us. We need to be allowed to fail, just like everyone else.

By not including us, the stigma, discrimination, prejudice, myths of dementia and isolation are being exacerbated by the organisations, researchers and service providers purporting to improve our lives or advocate for us.

NOTHING ABOUT US WITHOUT US will ultimately mean full inclusion will help to improve the lives of people with dementia, and reduce stigma, discrimination, isolation and other negative experiences of dementia.

What we do:

  • Website, weekly blog, newsletters
  • Weekly online support groups
  • Advocacy and speaking roles
  • Master Classes
  • Monthly Webinars: A Meeting of the Minds

Supported by technology:

  • Zoom platform for online
    • Board meetings
    • Events
    • Educational webinars
    • Master Classes
    • Weekly support groups

Collaboration is the key to our continuing success.

DAI is a global voice

  • We advocated for a person with dementia to become a member of the World Dementia Council
  • A member was invited to present at the World Health Organisations first Ministerial Conference on Dementia in March

Living better with dementia… It is possible.

But the attitudes of, and support from researchers and health care professionals need to change on this.

The language of dementia also needs to change to language we find empowering, enabling and respectful. Please see Alzheimer’s Australia updated language guidelines – https://fightdementia.org.au/sites/default/files/language%20guidelines.pdf

“People will forget what you said; people will forget what you did… But people will never forget how you made them feel.” (Mayo Angelou)

“People will forget what you said; people will forget what you did…
But people will never forget how you made them feel.” (Margaret Meade)

 

Membership of DAI

  • Membership of Dementia Alliance International is exclusive to people with dementia; click on the GREEN icon on our website
  • Family carers, professional service providers, researchers and health care professionals are welcome to join our newsletter mailing list, and support us through donations, click on the BLUE or BLACK icons

www.infodai.org/membership/

@DementiaAllianc

www.facebook.com/DementiaAllianceInternational

[email protected]

You can all sign up to receive our weekly blogs when they are published by clicking on the BLUE button on the left had side of the website.

Thank you.