Category Archives: Copyright 2016

Welcome to 2017 and Happy 3rd Birthday to DAI!

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Believe it or not, DAI has recently turned three! It is usual to say, Happy Birthday so this blog is doing just that! The seven co-founders of DAI who set up this organisation on January 1, 2014, could never have imagined, in our wildest dreams how much progress we would have made in such a short time, and although three of our co-founders are no longer with us, we believe they would be very proud of what they dreamed of and started.

Ironically, most of us forgot our own birthday, and therefore made zero noise about it on the day, but we are however, celebrating it with our members and families at our online Café Le Brain on Tuesday January 17 (USA/UK) / Wednesday January 18 (AU/NZ). Login details have been emailed to members.

We are also very pleased to be able to report that very soon, you will receive DAI’s first formal Annual Report, along with our other news, plans and dreams for 2017, in our first e-Newsletter for the year.

Frankly, it is totally unacceptable that the 2015 conclusion of the Organisation for Economic Cooperation and Development[i], based on an exhaustive study of the world’s 38 richest countries was that “Dementia receives the worst care in the developed world,” This is one reason why we are such passionate advocates for real change, not just more rhetoric.

We may be seen by a few as too critical of some things, or as disruptors, as we often question the status quo. However, if care was not so poor in so many countries, as per the conclusion above, we would not have to.

Our greatest aspiration, is that we can  work together, and that it will always be “Nothing about us, without ALL of us”. We hope that local, national and global groups of people with dementia and the many not for profit and other advocacy organisations can all work together, in cooperation and in harmony, towards the same or similar goals.

As we quoted on Day 1 of Dementia Alliance International:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. (Margaret Mead)

We are all working towards the same goals, which is to improve the quality of life for all people with dementia and our families; as a global organisation, DAI has a responsibility to work hard towards supporting that gaol in all countries around the world. If all the groups of people making a difference from every corner of the globe, all work together, imagine how much more powerful we could be…

[i] OECD (2015) Dementia: the OECD Response. Paris: Organisation for Economic Cooperation and Development.

Our Christmas wishes…

Firstly, we wish everyone a safe and peaceful festive season, and thank everyone for their support and input to DAI. It has been a very busy and productive year, and we are grateful to our members, our supporters, our sponsors and especially to anyone who has made a personal donation to help us continue with out work.

Rather than ending the year here with a wrap of our activities, which we will do when we publish our first Annual Report either before the end of December 2016, or early in January 2017, instead we are posting two very important Christmas wishes…

phyllis-fehrThe first request or wish was written by one of our new board members, also the Vice Chair of the Ontario Dementia Advisory Group, Phyllis Fehr.

“To the nurse who may care for me:

Hi, I am your assignment for today. I know I am just one of many but I ask you to please take the time to know me. You see I once was also a nurse. That really doesn’t matter as I am a human being. I come with an education and feelings. I am also a wife, a mother, a grandmother and more. Please take the time to read my chart as you can gain much knowledge about me before you ever meet me. In it you will find my medical history; this may give you a glimpse of what to expect from me. It will tell you what is being treated now.

Know full well that, that may not be my only problem.

What you see when you walk through that door may not be very telling. As you would see a patient that looks well and capable, able to do things on her own. If you don’t take the time you will not know that I have a cognitive impairment. You may not know that what ever you tell me is lost the minute you walk out of the room.

Don’t ridicule me for writing things down; you see I do this, so I will remember which will make your job easier in the long run. You see if you took the time to know me you would understand this, you would have not asked me if I was a baby who can’t remember anything. You would not embarrass me in front of others.

You see I know I have a problem, I am just trying my best to live well with what I have. If I can make notes then I can explain to my family what is happening, rather than them having to interrupt your already busy day to find out what is happening. I want to help you but in order for this to happen you must understand me. Well not just me all patients that you care for. You see stress makes my cognitive impairment worse, so yes you may have your hands full but I don’t mean to be a problem.

You see what is happening is that I am having a problem that I may not be able to comprehend or express but if you are aware you will be able to help me through this. You see I have early onset Alzhiemers, it started in my late 40’s.

No, I don’t look like a typical Alzheimer’s patient.

So it is hard to see it, but look, look there in my chart, oh there it is. If you aren’t well informed on the disease ask your educator. You could also go on line or you could become a dementia friend, they have lots of educational material on the dementia friends web site.

If I cause you any problems I do apologize. I do not mean to be a problem but this is what I live with. This is what many people with cognitive impairment live with, no matter what the cause of the impairment.”

Phyllis Fehr Copyright 2016

All people with dementia, and all members of Dementia Alliance International (DAI), have one other important Christmas wish:

“If you don’t believe we have dementia, please contact us in person, and make the time to find out about our the reality, before you accuse us of not having dementia behind our backs.

If it is really necessary in order to still believe us, because ‘we don’t look or act like we have dementia’, most of us would invite you to come with us to our next doctors appointment.”

Dementia Alliance International Copyright 2016

The 10th anniversary of the Convention on the Rights of Persons with Disabilities

screen-shot-2016-12-10-at-6-28-51-pmThe CRPD celebrates 10 years

In unison with the United Nations and the global disability community, Dementia Alliance International commemorates and celebrates the 10th anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), as we have been advocating globally for full and equal access for people with dementia to this Convention for almost two years, and many individuals living with dementia have been advocating for these rights since the it was formally adopted.

On 13 December 2006, the United Nations General Assembly adopted a resolution that established the Convention on the Rights of Persons with Disabilities (CRPD). It’s aim is to “protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”

The main message is that persons with disabilities are entitled to the full spectrum of human rights and fundamental freedoms without discrimination. To that end, the Convention promotes the full participation of persons with disabilities in all spheres of life, challenging customs, stereotypes, prejudices, harmful practices and stigma relating to persons with disabilities.

DAI also challenges customs, stereotypes, stigma, prejudices, harmful practices and discrimination, and are advocating for exactly the same rights as all others living with any form os disability.

The UN Committee on the Rights of Persons with Disabilities monitors how countries that have ratified the Convention are doing by reviewing them regularly and issuing concrete recommendations on how violations can be tackled and rights upheld.

DAI intends to monitor countries to ensure people with dementia are afforded the same access to the CRPD as all others with disabilities. Whilst 167 countries have ratified the CRPD, no country has yet acted on it for those of us diagnosed with dementia, and in close but autonomous partnership with Alzheimer’s Disease International, we sincerely hope we can impact tangible change.

Why is the CRPD so critical?

The CRPD is the first human rights treaty ratified in the 21st century, with the highest number of signatories in history to a UN Convention on its opening day. Most notably, it is also the first internationally legally binding instrument to specifically address the situation of persons with disabilities at a global level in an effort to promote, respect and fulfil their rights.

Since its adoption at the General Assembly in December 2006, the Convention, through its articles, has raised awareness about disability as both a human and a development issue. It marks a paradigm shift, where persons with disabilities are no longer viewed as objects of charity but as active members of society, in charge of their own lives, with free and informed consent. The CRPD is the chief instrument that consolidates the efforts made by the United Nations to promote the equal rights and inclusion of persons with disabilities in all spheres of society.

If you are diagnosed with dementia, or know someone who is diagnosed with dementia, it is free and very easy to join DAI. We have educational webinars, online support groups, peer to peer support, and many other services and resources to support you. 

Together, we can learn to live with dementia, not only die from it, and we are and will work in partnership to change the world. 

Celebrating the International Day of People with Disability

We celebrate the International Day of People with Disability (IDPwD)

In doing so, we also applaud the work of many of our members and all people living with dementia around the world who have been working in their local communities, or on the national or global stage towards a human rights based approach to dementia and our access to the Convention on the Rights of persons with Disabilities (CRPD).

This year’s International Day of Persons with Disabilities also falls alongside the 10th anniversary of the adoption of the CRPD. Last year on this day, the #aday4all hashtag became the most popular across the internet. We all hope this happens again in 2016!

screen-shot-2016-12-03-at-7-47-10-amDementia Alliance International recently became a member of The International Disability Alliance (IDA), with what is known as Observer Status, and we are actively working towards full membership status. For those of you who are new to IDA, it says on their website:

We are united for the rights of persons with disabilities on the world stage

“The International Disability Alliance is an alliance of eight global and six regional organisations of persons with disabilities. We advocate at the UN for a more inclusive global environment for persons with disabilities and their organisations. The Convention on the Rights of Persons with Disabilities (CRPD) is our touchstone. We are invested in ensuring that the 2030 Agenda and the Sustianable Development Goals are inclusive and in line with CRPD. We support organisations of persons with disabilities worlwide to take part in UN and international human rights processes, and use international accountability mechanisms.”

Why is this important to people with dementia?

This is important for people with dementia to ensure our rights and recognition at the highest levels as people living with disabilities, caused by dementia.

It is imperative as we all work together towards the demand we made in Geneva at the WHO First Ministerial Conference in Dementia, March 2015 for a human rights based approach to dementia,  and an approach that must include proactive rehabilitation and disability support.

Simply put, if communities must provide wheelchair ramps, they must also provide support for people with cognitive disabilities to live an independently in their communities as possible, and with equal access that others can expect, and are afforded.

If through providing proactive disability support for all, including people with dementia, our communities are dementia enabling and dementia accessible, then they will automatically be better for everyone of any age to live and thrive in.

Thank you to the outgoing DAI Board

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On 15/16 November, DAI held it’s this Annual General Meeting, and sadly we had a number of resignations, but also a number of nominees to fill the vacancies; This year, for the first time, we had more nominees than vacancies. Some members have resigned for health or personal reasons, and others as they have felt it time to allow new members to take leadership positions. Perhaps the most important thing as leaders that we can do, is pass the baton to new members.

It is an exciting time for DAI, and this week, as Chair, I would like to specifically thank the outgoing board members. In the next few weeks we will be providing our first formal Annual Report for our members as well, and I am thrilled to know that Dementia Alliance International, an advocacy and support group, still remains of, by and for people with dementia, and is making excellent progress.

Thank you to the outgoing Board 2016 members 

We extend our deepest thanks and sincere gratitude to Susan (Sue) Stephens, who has served on the board since we started on January 1st, 2014. DAI started with seven co-founders, from four different countries, and Sue is one of our founding members from Canada. Sue’s wisdom, intellect and humour has been invaluable to us, and we know our friendship will continue. Thank you Susan, from us all.

Special thanks also to our outgoing Vice Chair Helga Rohra, Board members Leo White and Jeanne Lee, and outgoing co-opted board member Mary Radnofsky. Whilst we are sad to see you move off of the board, we accept and understand your personal needs to step down, for health or personal reasons.

Sue, Helga, Jeanne, Mary and Leo: we greatly valued working with you on the board, and know we will still be in contact with you as your DAI family.

DAI has been honoured to have you all working more closely with us, and have been humbled by your friendship and work for all DAI members, and for all people with dementia globally.

The commitment to DAI and vision of all of our out going board members has been truly commendable, and we will miss you all greatly as board members. Being a board members brings with it a commitment in time and energy, and a loyalty to our organisational mission and vision, but does not prevent members from being active in their own local or national dementia communities. I have no doubt many of you will continue to work tirelessly for the good of all people with dementia in your own communities.

Next week, we look forward to introducing you to our new Board members for 2017.

Sincere thanks from us all,

Kate Swaffer
Chair, CEO & Co-founder
on behalf of the DAI membership

DAI November and December Webinars

Highlighted here are the last two  DAI “A Meeting Of The Minds” Webinars for 2016. We welcome you to join us, and suggest you book in now, as the Festive season is almost upon us!

If you follow the link to register for each event, you will find out the times in your city and more detailed information about each event.

November Webinar:

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  • November 23, 2016 – 3.00 PM (EST) New York USA
  • November 24, 2016 – 7.00 AM Sydney (EST)  Australia

About Myrra’s session: Self care is self-evident from early childhood on. Being deprived from self care goes at costs for dignity. The new concept of social health in dementia indicates how interpersonal relations can help to deal with the threat of declining self care. Social health involves making a dynamic balance between opportunities and limitations, affected by external conditions such as social and environmental challenges. As opposed to prescribed disengagement, social health focuses on people’s capacity to fulfil their potential and obligations and the ability to manage their life with some degree of independence despite a medical condition.

Consistent with the mission of dementia advocates, the focus is on what people can do and no longer ignoring capacities. Ignoring capacities unnecessarily contributes to exclusion and suffering. A social health hypothesis can be formulated stating that use and stimulation of remaining capacities and social inclusion improve quality of life. The effects of several psychosocial interventions such as occupational therapy support this hypothesis. These interventions support self care and facilitate normal life. The verious interventions will be discussed in the webinar. The results of interventions focusing on social health are gradually contributing to a turning point in dementia care and policy: the replacement of the disaster scenario with the scenario of living well with dementia.

Register here…

December Webinar:

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  • December 14, 2016 – 3.00 PM (EST) New York USA
  • December 15, 2016 – 7.00 AM Sydney (EST)  Australia

About Lee-Fay’s session: Most of us have things we like and dislike about family celebrations and holidays. Spending time with family, new experiences and a break from routine, and an indulgent lifestyle can be both pleasurable and difficult. There is no research on celebrations and holidays for people with dementia, so this session draws on general research on holidays with reflection on how this may apply to living with dementia. Holidays are associated with increased all-cause mortality.

The reasons for this are unclear and may include increased alcohol consumption, increased travel and physical recreation during holiday periods, and increased stress. Emergency hospital visits during holidays are associated with increased risk of death, possibly because of lower levels of or less expert staff. Women have reported that holidays do not always give them more ‘free’ time but may require an intensification of necessary activities. However holidays have also been described as times of social bonding and reaffirmation of social-identity. There will be an opportunity for participants to think about strategies that they may use to manage the difficult aspects of upcoming celebrations and maximize positive effects.

Register here…

Update 2 on the Social Forum by Mary Radnofsky

My Impressions of the United Nations, Human Rights Council, and Social Forum at the Palais des Nations in Geneva, 2016.

by Mary L. Radnofsky.

Thank you to Mary and Peter for representing Dementia Alliance International members, and all people with dementia so well.

screen-shot-2016-10-27-at-6-39-56-am“The United Nations – It’s one of the hallowed halls of peace we learned about in history books. But there I was, at the UN Human Rights Council for the Social Forum, October 3-5, 2016 with DAI Human Rights Advisor, Peter Mittler.

Most Americans think of the UN as being in New York, but it also has an important regional presence in Addis Ababa, Bangkok, Santiago, and Geneva, where we practiced our best Swiss French in buses and restaurants, and met with representatives of Member States and other Non-Governmental Organizations to discuss the Convention on The Rights of Persons With Disabilities (CRPD) – in every variant of English you can imagine.

To a baby-boomer like myself, the UN is a place of almost mythical significance, where post-World War II leaders came and sat, side by side, to listen and speak to one another, to try and understand social, economic, political, and other constructed problems that have bitterly divided humanity. That is why, under the inspiring leadership of Eleanor Roosevelt, the 1948 General Assembly of the UN adopted the Universal Declaration of Human Rights, which became the launch pad for later Conventions, including the CRPD.

Despite my childhood imaginings, I realize the UN is not magical, but rather a civilized place where persistent, hard-working people (whose names may never be known) have found common ground outside their geographic boundaries for the purpose of helping each other get along and find a better quality of life.

From around the world, people come to the UN speaking dozens of different languages. In this modern Tower of Babel, we all have a “shared disability.” It is, in fact, inherent in the very nature of humanity – linguistic and cultural divergence.

Such a disability could have forever prevented us from communicating ideas across borders. Yet through ongoing accommodation (e.g. the UN simultaneous translation, sign language, and closed-captioning system), we’ve learned to understand each other, with a little extra effort. But we also need some good will to interpret subtle concepts and cultural sensitivities in translation, because it’s not always easy to understand how someone else perceives the world.

In my brief time at the UN, though, I rediscovered in many people some of the fundamental truths that seem to easily cross national and linguistic boundaries, and define the human race. People proudly “admitted” that we can’t succeed alone, because we’re social creatures; we need each other. We need to feel useful and appreciated. We want to take care of one another because we are One. Yet we are also individuals, and we are defined, in part, through our unique relationships with each other. It was the best hope for humanity I’ve ever seen.

This year’s Social Forum included representatives of the 167 Member States officially having ratified the CRPD (not including the USA, unfortunately, but I’m going to work on that). Now that DAI is an Associate Member of the International Disability Alliance (IDA), we can advocate at the UN for including persons with dementia in any accommodations discussed for people with disabilities. This gives us an important, global platform from which to speak the truth about living with dementia, and how we want our governments to support us.

Peter and I both took the opportunity to ask questions and make comments at plenary and side sessions, to ensure that the voice of people with dementia was heard. From the number of positive responses to our interventions (most of which were recorded on the UN’s webcamTV, so see the links below), I think our voices were heard. Here’s the context of what we discussed.

Monday, October 3, 2016

As with most long-standing organizations, there were many formal, official speeches at this conference. For starters, we heard the President of the UN Human Rights Council, the UN High Commissioner for Human Rights, and Colin Allen, who is Chair of the International Disability Alliance (IDA). Mr. Allen communicated with sign language, and through his interpreter, explained that 80% of people with disabilities worldwide live in poverty, so he urged states to empower us all to eradicate it. While all speakers cited human rights as the basis, Mr. Allen specifically called for “Humanity, by the people, for the people, and with the people.”

It is an especially compelling argument these days, as we continue to witness acts of atrocious inhumanity not only in war zones, but in so-called “developed” countries, some of which still institutionalize people with disabilities in horrible conditions.

Session: Embracing Diversity & Awareness Raising

Professor Anna Lawson, Disability Studies Director in Leeds, England, spoke of the need to conduct research to provide evidence for reforming government policies. She acknowledges the importance of statistics, but more importantly, realizes the need for qualitative data that can reveal truths about environments that don’t lend themselves to easy classification. She also understands that qualitative methods can explain WHY problems exist, and reveal how marginalized people live in rural, remote locations, or behind institution walls. They don’t communicate in the way people usually do, in part because they’re children, elderly, or people with dementia. She seems to really understand QUALITY OF LIFE issues.

Catalina Devandas Aguilar, UN Special Rapporteur on the Rights of Persons with Disabilities, and herself a wheelchair user, explained that in communities and in the media, there are relatively few, and mostly mistaken images of persons with disabilities.

She said we need to make a paradigm shift; we are under-represented in movies, TV, and in research, for example. To bring about change, we must be included, and this debate must be taken beyond the disability community; it must be viewed on the human rights level of the global stage. She is also concerned with the rights of women, children, and the elderly, and recognizes that many people with dementia are often part of other able and non-disabled communities that already suffer discrimination for different reasons, so their human rights must be protected from all angles.

Peter spoke about the need for Member States to include people with dementia in the implementation of the CRPD. (See Peter’s comments on UN WebTV; click on the link and advance the Time slide indicator to 44:32. http://webtv.un.org/search/persons-with-disabilities-and-human-diversity-social-forum-2016/5152740834001.)

I spoke (ok, nervously at first, so forgive the trembling in my voice!) to discuss the importance of ethnographic research using evolving methodology, not just pre-determined checklists based on a medical model, to investigate the subculture of dementia that exists within every society. (See Mary’s comments on UN WebTV; click on the link and advance the Time slide indicator to 47:46 http://webtv.un.org/search/accessibility-and-non-discrimination-social-forum-2016/5152740831001.)

I will describe the next set of sessions in coming blogs, and include more photos. If you’d like more details, feel free to contact us at [email protected] or go to UN WebTV to watch the whole Social Forum yourself. It’s broken down into sessions, so you can start here, if you like. (http://webtv.un.org/search/opening-session-social-forum-2016/5152740796001)

The Best is Yet to Come!”

Mary

DAI Media Release: conference guidelines

Dementia Alliance International is today launching the first edition of our conference guidelines based on feedback from people with dementia and family care partners since 2012.

Of course, it was not possible to receive feedback from the more than 47 million people currently diagnosed with dementia, but we did engage with hundreds of people from more than 12 countries.

Your feedback is important, and if you have ways in which the next edition of this document could be improved, we would appreciate hearing from you.

“Because members of Dementia Alliance International (DAI) have a unique perspective on conferences we decided to assemble responses from post-event informal email surveys of the past four years to see how people with demen a and care partners feel about the access, support, and enablement provided at professional mee ngs of Alzheimer’s Disease Interna onal (ADI) and other conferences or events.

In other words, we asked if such events are dementia friendly, accessible, and accommoda ng for people of all ages and disabilities.”

You can download the full report here supporting-and-accommodating-people-with-dementia-at-conferences-and-other-events_2016, or email us for printed copies at [email protected]

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