Category Archives: disAbility rights

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

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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HOW THE UN PROTECTS OUR HUMAN RIGHTS

AN INTRODUCTION TO THE UN SOCIAL FORUM

From October 3rd-5th DAI members, Mary Radnofsky and Peter Mittler had the opportunity to take part in a meeting organised by the UN Human Rights Council which consists of 47 United Nations Member States elected by the United Nations General Assembly.

“Our aim here is to provide some background information about the work of the UN Human Rights Bodies. Up to now, we have focused on the work of the UN Committee on the Rights of Persons with Disabilities because it is this Committee that empowers organisations OF persons with disabilities such as Dementia Alliance International to submit their own reports and to meet the Committee during their Spring and Autumn three week sessions.

On August 25th 2016, a three-person delegation from Alzheimers Disease International and Dementia Alliance International met the CRPD Committee for an hour to demand full access to Convention on the same basis as those with other disabilities. They asked us many searching questions but were clearly in strong support. This is because the CRPD is the first Convention to be co-written by the people it is designed to benefit and because 17 of its 18 members are themselves persons with disabilities.

The Human Rights Council is an inter-governmental body within the Office of the UN High Commissioner for Human Rights www.ohchr.org. It is responsible for strengthening the promotion and protection of all human rights around the globe and for addressing and making recommendations on human rights violations. It has the right and the ability to discuss all thematic human rights issues and situations that require its attention throughout the year.

The Universal Periodic Review mechanism routinely assess the human rights situation in all United Nations Member States. Its Advisory Committee serves as the Council’s “think tank”, providing it with expertise and advice on thematic human rights issues. In addition, a Complaints Procedure allows individuals and organizations to bring human rights violations to the attention of the Council.

The Human Rights Council also works with special rapporteurs, special representatives, independent experts and working groups that monitor, examine, advise and publicly report on thematic issues or human rights situations in specific countries. The Special Rapporteur on the Rights of Persons with Disabilities is Ms Catalinda Devandas Aguilar with whom DAI is in regular contact and is aware of our concerns and priorities. We are also in touch with the office of the Independent Expert on Older Persons and the Longevity Centre, all based in Geneva.

Every year the Human Rights Council chooses a theme for a Social Forum. This year’s choice was:

The Promotion and full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities in the context of the tenth anniversary of the adoption of the Convention on the Rights of Persons with Disabilities

The meeting was attended by government ministers, their ambassadors to the UN, a wide range of Disabled Persons Organisations from every continent. There were also many representatives of National Human Rights Organisations which were created by the 1983 Vienna Convention to be independent of government and to protect and promote human rights, now including those of persons with disabilities.

Over the three days, the meeting reviewed what the Convention had and had not achieved; what obstacles had been encountered on the long journey to claim the rights spelled out in detail in the General Principles and Articles of the Convention.

We were at the Social Forum because most of the meeting was discussing ways to ensure that persons with disabilities were included in the 2015-2030 Sustainable Development Goals which were launched by the UN General Secretary Ban-Ki-Moon with a commitment to Leave No One Behind – a concern we had raised with the CRPD Committee a few weeks earlier.

STRUCTURE OF THE SOCIAL FORUM

Over the three days of the Social Forum there were 12 Plenary Panels. Spokespersons of Disabled Persons Organisations were on most of them, often in a majority. They were very well chaired and excellent questions were put to the panellists by a moderator. I was a panel member for a session on Under-Represented Groups of Persons with Disabilities and Mary and I made good use of opportunities to raise questions from the floor.

THE PANEL THEMES

  • Setting the Scene: From Needs to Rights- Advances and Challenges
  • Embracing Diversity and Awareness Raising
  • Accessibility and Non-Discrimination: Leaving No One Behind
  • Strengthening Equality and Specific Measures
  • Meaningful Participation and Empowerment
  • Making Development Inclusive
  • Strengthening Accountability
  • Informing Policy
  • Realizing the Human Rights of Persons with Disabilities
  • Implementing the 2030 Sustainable Development Goals Agenda: The Future We Want

GENERAL IMPRESSIONS

About half way through the meeting I had an opportunity to summarise my perceptions of the messages being conveyed by speakers from many organisations of persons with disabilities.

These ranged from long-established and highly influential NGOs (Inclusion International (our best friends and allies); the World Blind Federation, World Deaf Federation, the World Network of Users and Survivors of Psychiatry.

These and some newer organisations are members of the International Disability Alliance. IDA is an alliance of eight global and six regional organisations of persons with disabilities which advocates at the UN for a more inclusive global environment for persons with disabilities and their organisations.

Just before the Social Forum, Peter Mittler attended a 3-day meeting of IDA where DAI was accepted as an Associate Member – the first step to becoming a full member. Its Chair, Colin Allen who played a key role in the Social Forum is President of the World Federation of the Deaf and communicates through exemplary Sign Language Interpreters www.internationaldisabilityalliance.org (with photos of Social Forum).

Peter stressed that he was speaking only for DAI but later received strong support from other NGOs. These were the main points.

Half way through the Social Forum there was a clear picture emerging which the organisers should address in using their status to put more pressure on Member States to improve CRPD implementation

  1. Disabled Persons Organisations from all parts of the world are celebrating the 10th anniversary of the Conventions but are dissatisfied with its implementation by their governments.

2. Their main complaint centres on the limited extent to which they are consulted by governments.

3. The UN should be more proactive in insisting on Article 4.3 which states:

In the development and implementation of legislation and policies to implement the present Convention and in other decision-making processes concerning issues related to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their respective organisations.

4. Very few Member States have followed this advice. A notable exception is Japan where the government agreed to the demands of its Disabled Persons Organisations to delay ratification of the CRPD until its legislation had been amended to make it compliant with the Convention. The government set up a committee to do this, co-chaired by a Minister and a person with a disability. Half the committee were persons with disabilities who were paid as temporary civil servants.

5. Ever since the 1981 International Year of Disabled Persons and subsequent Regional Decades of Disabled Persons, the UN has recommended that governments should establish a Focal Point for Disability, directly responsible to the Head of State or Prime Minister rather than delegating this responsibility to a single Ministry (usually Health, sometimes Justice, Social Welfare or even Foreign Policy). This Committee should include members of a Coalition of Disabled Persons Organisations speaking whenever possible as a single voice in the development of policy.

This was how the CRPD was created and should be implemented. If this does not happen, we will hear the same complaints when the time comes to celebrate the 20th anniversary of the Convention in 2026 and again in 2030 when we review the Sustainable Development Goals.”

Extending CBR to older persons: A global imperative

screen-shot-2016-09-03-at-3-54-36-pmWelcome to October, and hopefully a rest after a huge month of raising awareness and members activities! However we need to kick of this month with a video presentation by Prof. Peter Mittler for the 2nd World CBR Congress conference in Kuala Lumpur last week. We produced a flyer for this event as well, which went into more than 1500 conference bags, downloadable here: extending-cbr-to-older-persons-a-global-imperative-dai-prof-mittler-september-2016. Thank you Peter for all you do for all people with dementia.

CBR VIDEO NOTES (not the full transcript)

Personal message to viewer

YOU CAN MAKE A DIFFERENCE TO THE QUALITY OF LIFE OF PEOPLE WITH DEMENTIA

You can ALL be dementia friends, supporters, champions

IMAGINE a series of concentric circles.

In the middle of the smallest circle is YOU or a PERSON LIVING WITH DEMENTIA.

The next circles include-

– your family

– your neighbourhood

` friends and acquaintances

– where you work and in your organisation

-the OUTER circles are about climate change, inequalities and the UN

– and its international treaties on the human rights of everyone on the planet Including the UN Convention on the Rights of Persons with Disabilities to which 166 countries are now committed in international law.

I’m here because Dem receives worst care in the developed world -even worse in Global South

MY BACKGROUND

I’m Human Rights Adviser to Dementia Alliance International – the voice OF people with dementia.

ID, WHO CBR, HR, CRPD,- CBR from the start; now more relevant than ever-2030

Diagnosis- DAI –Aim live well with dementia;

claim HR-CRPD

CBR approach is ideal for dementia

CBR can support people who may have dem- carry out simple checks, recommend asst

PWD EXPERIENCES AND PRIORITIES

Diagnosis: (v rare in Global South). –Spread the message here; we need to get it into KL Declaration.

QUINN

The UN Disability Convention is a mirror to society. It makes us face up to our own values and it forces us to acknowledge the large gap that still exists between the myth system of our own values and the operations system of how these values are dishonoured in daily practice.

As with all mirrors, we can refuse to look into them; we can look at them but ignore their reflection or we can take notice of our reflection and commit to a process of change.

 

 

World Alzheimer’s Month 2016 wrap up

IMG_4978We have attempted to shared as many #RememberMe stories as possible for World Alzheimer’s Month 2016, all either highlighting some very personal experiences of living with dementia, or some of them about some of the  brilliant local, regional, national or worldwide advocacy some members are involved in.

Whether it is global, or simply helping the person next door, it is important work. Sharing a personal story via a blog, or at you local town hall or church, is just as important as making a video thy is shared more publicly. It is not a competition of who is doing more, or of the best.

There are simply not enough days in World Alzheimer’s Month to share them all, which also means we have many members stories to continue sharing over the next few months! What we did was to sent out messages to members to send in their stories, and the ones we have shared this month are simply from those members who responded. We have not even been able to add them all during September, but will endeavour to do so over the next few weeks.

That does not mean, of course, that there are not many other brilliant stories of excellent advocacy to share. Less than 5  years ago, there were not so many people with dementia actively working so publicly as advocates; today, we could (if we had the funds to employ someone!), write a daily blog every single day of the year, as so many are all over the globe are now doing wonderful things.

People with dementia have been sharing their own stories, in their own ways, of ‘Living with dementia’ for some time now. Each person’s way of raising awareness of dementia is important, whether it is a blog here or elsewhere, an article in a magazine, an event of some kind, a documentary or at a conference.

And all of these stories or advocacy work should be shared widely; this is in part what advocacy means.

We all have really important issues including reactions of close family and friends, coping with disability due to dementia, and even issues such as stigma, isolation, loneliness and discrimination to share, but also there are many stories of living well with dementia, in spite of it. These are equally as important, and just as important, are the events which may have limited or broad outreach, as raising awareness is.

So to end our series of daily blogs for #WAM2016 #DAM2016, we are highlighting a few things our members and others have been up to this month.

Wendy Mitchell, Jennifer Bute, Chris Roberts, Keith Oliver, Larry Gardiner and others in the UK have been involved in a documentary being made for Japan out living with dementia.  Wendy lives in York and writes a great blog, including this one about having the Japanese film crew in her home recently. DEEP and YoungDementiaUK have been very include wiht a lot of activities this month as well, including hosting a conference.

There have been so many conferences in so many parts of the world this year for #WAM, we would need to write a book to cover them all. Nigeria perhaps was the most important one of all, as the less developed countries are needing so much more support to raise awareness than the developed countries; in fact, even for people to get a diagnosis is a major concern for them!

Chris Roberts and his wife Jayne and daughter Kate from Wales had a BBC documentary made about their story of dealing with dementia, and it was great news to read on Facebook it has been picked up by an agency for global distribution. Chris has also been nominated as a finalist in the National Dementia Care Awards and we wish hm luck again this year.  You can view Chris’s documentary here…

Other members have been busy as well, and we celebrate again the prestigious Inaugural Richard Taylor Memorial Advocates Award won by Mick Carmody this year.

Some of our Aussie members such as Eileen Taylor and John Quinn and their care partners have been busy including working on a Dementia Friendly Community project. You can see a video of John Quinn talking about living with dementia here. Edie Mayhew and her partner Anne Tudor have also been very busy in Ballarat working on a campaign in their home town of Ballarat called Bigger Hearts.

It is not possible to cover everyone’s stories or activities today, and if we headed to America and Canada to give a preview here today, it would take too long to write, let alone read!

Susan Suchan though, has been involved in a documentary of her life and what it is like having dementia, and in particular living with the condition known as Primary Progressive Aphasia.

You can read more about Susan’s documentary here…

In our final blog for World Alzheimer’s Month 2016, we apologise to those we have not (yet) recognised for their advocacy or other efforts, but we hope you will think about sending us your stories for future blogs here.

It has been a very busy and productive month all over the world as we collectively raise awareness of “Dementia from the Inside Out”!

The Well-Educated Lab Rat: Clinical Research from Inside the Maze

Screen Shot 2016-08-13 at 8.24.56 AMMary L. Radnofsky, PhD, retired Professor and Board member of Dementia Alliance International (DAI) gave a brilliant keynote presentation in Budapest at the ADI2016 conference.  You can read the abstract, download her slides and view her presentation in this weeks blog. Thank you Mary for representing us so well, and for your permission to share it.

The Well-Educated Lab Rat:  Clinical Research from Inside the Maze

“As a former research professor and ethnographer, I know about quantitative and qualitative data-gathering instruments; I’ve done fieldwork in educational cultures with children, and watched these “rats” in their classroom “mazes.” But my reason for becoming the lab rat myself, in medical research, was unrelated to my profession: I just needed to see a doctor because I was sick. With a white matter disease, no job, and no health insurance, I found a way to access the best physicians, medical tests, and cutting-edge technology in the country: volunteer for a clinical trial at the National Institutes of Health.

Two years later, I’m still a part-time lab rat. Sometimes it’s actually good healthcare, as I get the most concerned specialists focused on me. I also learn much from these top experts about my condition. But being a lab rat takes emotional and physical tolls; for example, I didn’t have the “target” disease in my first clinical trial, so I “lost” that year, in that I couldn’t get treated. I do have a rare disease, though, so I got many tests – some fascinating, some painful – both on my mind and body. And I caught a hospital-borne virus that nearly killed me. That was a heavy toll, but I recovered, so I volunteered for another study. I still believe in the power of science.

I was enrolled for genome mapping, and had exciting results – though inconclusive, so I’m still waiting to “fit in” to another study for follow-up, and another year has passed. I’ll go back into the cage with the other lab rats, busy on a roller coaster of tests, expectations, procedures, paperwork, schedules, bureaucratic mazes, interviews, delays, confusion – oh, and by the way, we’re sick!

But we’re still important, funny, loved, needed, wanted, and occasionally, very well-educated lab rats. And we’ve got something to say about the ways you study us.”

By Mary L. Radnofsky, PhD

You can download her slides here: The Well-Educated Lab Rat_Mary Radnofsky PhD_ADIBudapest2016 and watch her speech below.

 

LIVING WELL WITH DEMENTIA: A FUNDAMENTAL HUMAN RIGHT

peter mittlerThe following blog is a copy of an excellent speech given by DAI member Emeritus Professor Peter Mittler at AAIC conference in Toronto last week, for the Axovant symposium “The debate continues: Unraveling the science of Alzheimer’d Disease”.

Our sincere thanks to you Peter, for representing us so well once again.

LIVING WELL WITH DEMENTIA: A FUNDAMENTAL HUMAN RIGHT

“I have been invited to this conference as Human Rights Adviser to Dementia Alliance International. I am here because “dementia receives the worst care in the developed world”. That is the conclusion of the Organisation for Economic Cooperation and Development, based on an exhaustive study of the world’s 38 richest countries.

It is also a human rights issue because it is not about dementia but about people living with dementia.

While we wait for dementia researchers to find a cure, the 47 million people now living with dementia and the hundreds of millions predicted by the end of the century could live much better with dementia if they were supported to do so in their own homes and communities. In the meantime, the medical profession is well placed to use its prestige to influence public opinion, politicians and the media by avoiding the use of degrading language involving time-bombs and tidal waves, as well as commitments to ‘end dementia’ by a given year.

The words Human Rights and Dementia are rarely found in the same sentence but history was made on April 21st 2016 when the Council of Alzheimers Disease International committed its 83 national Alzheimer Associations to a human rights-based policy which includes full access to the United Nations Convention on the Rights of Persons with Disabilities.

Dementia Alliance International is the sole international self-advocacy organisation OF people with dementia. We were founded in 2014, and now have around 2000 members across the world, all of whom have a diagnosis of dementia. We work in close but autonomous partnership with Alzheimers Disease International which works FOR people with dementia.

I wonder how many of you have heard of us because nearly half our members are in North America. Whether you have or not, we are grateful to Axovant for making our human rights booklet available at this conference. It tells you about our priorities, weekly support groups in different time zones, webinars from world leaders in research and policy, the books we’ve written, our daily blogs in the social media and on our closed Facebook page, as well as developments in our campaign to claim our human rights.

I was diagnosed with early very mild Alzheimers Disease ten years ago. Some doctors tell me that the fact that I am still alive and functioning is due to the 3650 Aricepts I have taken over the last ten years. Common sense as well as research tell me that it can’t be that simple.

Most of the people I work with in DAI say that advocacy has given them a new purpose in life. Dr Jennifer Bute from the UK calls her blog: A Glorious Opportunity. Some of us are fortunate enough to be able to say that we live well with dementia and even aim to live beyond dementia but we know that this is not the experience of the majority. So when we object to being described as sufferers, it is because we suffer most from the way we are treated by society and from the poor quality of services and supports available to us throughout the world.

Many national reports give specific examples not only of poor services but of systemic human rights abuses. A recent Freedom of Information enquiry conducted for the UK Alzheimer’s Society revealed that people with dementia stay five to seven times longer in general hospitals than others over the age of 65 and that thousands are being discharged between 11pm and 6am each year. While they are there, their basic human right to “respect for human dignity and individual autonomy” is systemically disregarded.

HOLDING GOVERNMENTS TO ACCOUNT

So how can we hold our own governments to account for providing the worst care in the developed world?

First and foremost, governments need to ask people with dementia what matters to them and what changes they want to see.  That question also needs to be asked in the communities in which they live.

It’s not enough to invite us to conferences to tell our stories or even join committees because we can be heard but ignored or disqualified by diagnosis. I have worked in various capacities with people with intellectual disabilities; like them, I’m wary of tokenism.

It was not tokenism when Robert Martin, a New Zealander with an intellectual disability who spent many years in an institution, was last month elected to the United Nations Disability Committee, 17 of whose 18 members are people with disabilities. How long will it take for a person with dementia to be proposed by their government to become a member?

DAI asks the countries represented at this Conference to enable their fellow citizens with a diagnosis of dementia not merely to be consulted when decisions affecting their health and well-being are being taken but to work in full partnership with them as the main stakeholders and intended beneficiaries. That imperative is fundamental to the UN Convention on the Rights of Persons with Disabilities. People with dementia are experts by experience -and even have the T shirt.

Right from the start, DAI adopted the commitment of the global disability movement to the principle of Nothing About Us Without Us –the title of a book written by Christine Bradley, one of DAI’s co-founders who worked in the office of the Australian Prime Minister as science adviser. I know from my own experience as adviser in intellectual disability to the UK government and to UN agencies that having good legislation means nothing if it does not reach the people it is designed to benefit and if there are no means for people to hold their governments to account. The UN Convention empowers them to do just that

The Japanese government deserves a UN prize for listening to its Coalition of Disabled Persons Organisations who told them not to ratify the UN Convention until Japanese laws had been changed to make it compliant. The Government Committee appointed for this purpose was co-chaired by a Minister and a person with a disability. Members with a disability were paid as temporary civil servants to co-draft the necessary legislation.

For people with dementia, it’s a steep mountain to climb because we live in a world of US and THEM, even in so-called dementia-friendly communities who don’t consult us before deciding what’s good for us.

By the same token, many Health Ministries are launching dementia strategies without fully involving and listening to the people they are designed to benefit.

Our co-founder and Chair Kate Swaffer lives in Australia and is with us today because she is also a member of the World Dementia Council, as is Hilary Doxford from England.

In March 2015 Kate Swaffer made three demands on behalf of our members at WHO’s First Ministerial Conference on Dementia:

  • Policy and practice for people living with dementia should be based on the UN Convention Rights on the Rights of Persons with Disabilities.
  • Research should focus as much on care and support as on cure
  • A more ethical pathway of care, including pre and post-diagnostic support from a wide range of rehabilitation professionals in the community

We are now developing a formal working relationship with WHO in preparation for a new global dementia policy which will be discussed by the World Health Assembly next year.

Some of you may question whether we have the capacity to demand full participation in decision-making with professionals and politicians.

Generalisations about us are problematic because, notwhistanding our diagnosis, we are all unique individuals; some have more capacity than others but our levels of cognitive functioning can change dramatically in the course of a single day or hour.

Under-estimation of the capacity of people with all disabilities is the biggest single obstacle we face in remaining active citizens in our local communities.

No one would have predicted that children with Down Syndrome would complete secondary and tertiary education alongside their peers, that a person with an intellectual disability would address the General Assembly of the United Nations or that the UN Convention would be co-written in full partnership with persons with disabilities.

I say to you in all seriousness that you cannot understand the impact of dementia on people living with dementia without reading the books they have written. You all subscribe to evidence-based policy: these books provide evidence in plenty of the gap between policy and practice. I would go further and say that researchers need to consider the experience of people with dementia as hard data, just as important as data from the holy grail of randomised controlled drug trials.

My prescription starts with Kate Swaffer’s What the Hell Happened to My Brain? and continues with the others because each reflects a unique individual who is not only telling their story but making recommendations for changes in policy and practice and in research priorities. All of them describe dramatic changes in cognitive functions within a single day.

‘I CAN LIVE WELL WITH DEMENTIA’ STATEMENTS

We also have the ‘I Statements’ collected from people living with dementia in several countries around the world and which now form the basis of the Global Dementia Charter which international NGOs and professional associations are required to sign. These ‘I’ statements just happen to reflect key Articles of the UN Convention.

I will focus on two priority areas: diagnosis and ‘post-diagnostic support’

DIAGNOSIS

“I expect to have access to a doctor to check if I have dementia (art.25); medicine that helps and treats me (art. 26).

The first point to make is that very few people in Low and Middle Income Countries receive a diagnosis and that in the richest countries it depends on where you live and whether you can pay for it.

The stories told by people with dementia about the way they were informed of their diagnosis range from exemplary to the good, the bad and the unacceptably ugly.

Kate Swaffer has copyrighted ‘Prescribed Disengagement® to characterise the advice that she received at the age of 49 to “give up work, give up study, go home and live for the time you’ve got left.” Her husband was told he would soon have to give up work to care for her. She cried for weeks but completed an M.Sc. in Dementia Studies and is now studying for a PhD and travelling the world to advocate for a better life for people with dementia.

The late Richard Taylor, a clinical psychologist and a highly respected co-founder of Dementia Alliance, also cried for weeks after his diagnosis and describes symptoms and relationship problems seen in people with Post-Traumatic Stress Disorder.

His book Alzheimers from the Inside Out includes a list of 30 things that he would do or bear in mind if he was “an M. Instead of a Ph. D.” These should be glued to the desk of any professional charged with the responsibility of delivering a diagnosis of dementia.

Many people with young onset dementia have been handed a prescription and told to come back when they are 65. This can be particularly traumatic in mid-career and with responsibilities for young children and elderly parents.

Legal capacity and fitness to drive are immediately threatened by a diagnosis of dementia, rather than evaluated by independent assessment of functioning.

Worst of all, a newly diagnosed person of any age is immediately confronted by the stigma and fear associated with dementia. A study by the UK Alzheimers Society reports that one third report losing friends. Neighbours and people they know cross the street to avoid them and some family members stop visiting because they are afraid that they will need to care for them. When Richard Taylor asked a close friend why he had stopped calling and was told that he didn’t know what to say, he said, try “Hello”.

Social isolation is compounded by lack of confidence in going out because of fear of failing. One third of people with dementia and 50 per cent of care partners are clinically depressed. Unusual behaviour or expression of emotion may be labelled ‘challenging behaviour’ and treated with long term psychotropic medication.

A REHABILITATION PATHWAY

DAI recommends that that ‘post-diagnostic’ support which is only available in very few places should be reconceptualised as a rehabilitation pathway. A service along these lines is being piloted in Australia by the Queensland Health Authority. It is run by Dr Denise Craig, a clinical psychologist who worked in partnership with Kate Swaffer in designing it

Please take part in a short thought experiment:

What services would you receive if you sustained a severe brain injury as a result of a stroke, a road traffic accident or a penetrating gunshot wound?

While you are still in hospital but no longer under intensive care, you might be seen by a range of professionals whose long-term aim is to enable you to return to the maximum extent possible to the way you lived before the brain injury. That’s what we want for people with dementia.

These might include a specialist in rehabilitation medicine, a physiotherapist to help you to learn to walk, a speech and language therapist to restore language and communication, a clinical psychologist to monitor and restore cognitive functioning or consider the need for an appropriate psychosocial intervention and a social worker or counsellor to discuss your transition from hospital to home.

Once home, you are likely to be visited by an occupational therapist who will discuss with you and your partner ways in which your home and basic equipment such as your personal computer might be adapted to meet your individual needs.

USING THE UNITED NATIONS CONVENTION TO PROMOTE THE RIGHTS OF PEOPLE LIVING WITH DEMENTIA

People with dementia are included in the broad definition of disability in Article 1 of the Convention but have not been included in its implementation by their governments. By the same token, the dementia strategies now being launched by many governments who have ratified the Convention do not reflect the General Principles and Articles of the Convention.

There is a pervasive but profoundly mistaken assumption that people with dementia are not included in the Convention. It may also be due to the fact that the international dementia community has taken no part in its creation or implementation and is only now gaining access to rights which are established in international law but ignored in practice. Dementia Alliance International is in dialogue with the United Nations on this matter because it amounts to systemic discrimination.

President Obama exceptionally signed the Convention which commits the US government to certain General Obligations but Senate has twice failed to ratify it.   The 165 governments who have ratified the Convention are committed to its implementation and monitoring in international law. They can also be held to account by their own people, especially organisations of and for people with disabilities. Organisations for and of people with dementia are only now beginning to do so.

The Canadian government is currently in dialogue with the UN CRPD Committee which is studying its report on how it has implemented the Convention’s Principles and Articles. The Committee encourages civil society organisations to write parallel reports which are taken into account in its Concluding Observations and Recommendations and subsequently followed up.

The Alzheimer Society of Canada has recently joined with other Canadian disability organizations to argue for the inclusion of people living with dementia in the implementation and monitoring of the UN Convention. Furthermore, the Ontario Dementia Advisory Group, all of whom are DAI members, included access to the CRPD as one of their recommendations in testimony before a committee of the Canadian Senate.

CONCLUSIONS

I want to conclude by asking you to imagining two planets: Planet Disability and Planet Dementia. They spin on different axes but occasionally come close enough for their technology to reveal that there are human beings on both planets. Try as they might, they are unable to devise a way to communicate or join one another.

The whole of my professional life has been spent on Planet Disability where I have been a clinical psychologist, academic, policy adviser to governments and UN agencies but also worked in a voluntary capacity with Inclusion International, a world-wide federation of over 200 regional and national organisations for – but increasingly of – people with intellectual disabilities.

When I suddenly found myself on Planet Dementia, it really did seem to be a very different world:

  • first because of the prominence of the medical profession and biomedical research, Health Ministries and WHO
  • second, because of the comparative absence of protest about drastic cuts to services and supports
  • but mostly by the absence of human rights in general and the then newly launched UN Convention in particular not only from government policy and professional practice but in the leading dementia research and professional journals and in those of national Alzheimer Societies.

The last two years reflect a shift of emphasis in all three areas.

Kate Swaffer’s demand for research to focus as much on care and support as on cure is increasingly reflected in research funding, the policy of the World Dementia Council and the UK Alzheimers Society. Sadly, too few researchers from the social sciences have so far submitted grant applications.

In the last analysis, improvements in services and supports to enable people with dementia to live well and to enjoy a higher quality of life in the community depend on a much higher level of awareness of dementia not only in the general public but among professionals and policy makers.

Dementia-friendly communities have contributed a great deal to raising public awareness but DAI takes the view that too many reflect an US and THEM perspective. This is inappropriate for people with dementia who have been active members of their local communities all their lives

The pervasive under-estimation of our potential contribution creates oppressive and humiliating barriers to full partnership. Some of us have even been publicly accused of being imposters because no one with dementia could possibly address a conference.

The last word goes to Professor Gerard Quinn, a distinguished academic lawyer and one of the first to secure disability rights as a United Nations priority:

“The UN CRPD is a mirror to society. It makes us face up to our own values and it forces us to acknowledge the large gap that still exists between the ‘myth system’ of our own values… and the ‘operations system’ of how these values are dishonoured in daily practice. Thus the Treaty is a force for rationality as well as a vehicle for carrying these values squarely to the heart of the disabilities field.

As with all mirrors, we can refuse to look into them; we can look at them but ignore their reflection or we can take notice of our reflection and commit to a process of change”. (Quinn 2009).

Peter’s power point slides can be downloaded here: Peter Mittler-Toronto-slides-27 July

Emeritus Professor Peter Mittler
DAI Human Rights Advisor
UN Consultant on disability
Former Advisor on Disability to UK Government
Former President, Inclusion International

Copyright 2016: Dementia Alliance International and Peter Mittler

A Human Rights update from Mary Radnofsky

DAI member Mary Radnofsky reports from her time at the United Nations in New York. Mary has also provided a gallery of images she took whilst attending the meeting representing us. Thank you from all of us Mary.

Dear Fellow Members of Dementia Alliance International (DAI),

I was recently in New York to represent DAI at the annual United Nations Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities (CRPD) June 13-17, 2016.

DAI’s Human Rights Adviser, Professor Peter Mittler, had to be in Brussels for another important event and has contributed background information for this report.

DAI is the global organisation OF people with dementia. We work in close but autonomous partnership with Alzheimer’s Disease International: the global organisation FOR people with dementia. In April 2016, the Council of ADI adopted a human rights-based policy, which includes full access for people living with dementia to the CRPD.

The United Nations has two basic roles: Peacekeeping and Economic and Social Development.

The UN commitment to human rights was reflected in the original Universal Declaration of Human Rights in 1948. This was followed by legally binding Conventions on Economic, Social and Cultural Rights; Civil and Cultural Rights and by a series of Conventions designed to benefit sections of the world’s populations who were not benefiting from the 1948 Declaration: women, children, people exposed to racial discrimination and torture, migrant workers. The CRPD is the most recent of these treaties, and preliminary discussions are now taking place on a Convention on the Rights of Older Persons.

The UN Convention on the Rights of Persons with Disabilities (CRPD)

The CRPD is an international treaty whose purpose is to ensure that governments safeguard the human rights of persons with disabilities. Because it was adopted by the UN General Assembly in December 2006, we are celebrating the 10th anniversary of a landmark international agreement that holds governments both to a moral standard and to a commitment in international law to promote and protect the rights of people with disabilities.

ISSUES RAISED BY DEMENTIA ALLIANCE INTERNATIONAL

Although people living with dementia are included in the broad definition of disability in Article 1 of the CRPD, they are being excluded from its implementation by their governments (except in Scotland).

In addition, new regional and national dementia strategies launched in the last few years by governments who have ratified the CRPD have not used CRPD Principles and Articles to underpin these strategies.

This may reflect the fact that organisations for people with dementia were not present when Disabled Persons’ Organisations first proposed such a Convention to the UN in the 1980s, while it was being co-drafted by government representatives and Disabled Persons’ Organisations or in its subsequent development and monitoring.

Under the Convention, DAI already has the right to raise its concerns with the United Nations, the European Commission and the World Health Organisation because the exclusion of people with dementia from an international treaty to which they are legally entitled is tantamount to discrimination, even though this may not be the intention.

Participants at the Conference of States Parties (COSP)

Delegates from the 165 countries that have ratified the CRPD assemble yearly for the COSP to discuss what has, and has not been achieved in meeting the requirements of the treaty.

Non-Governmental Organisations and Disabled Persons Organisations can also send representatives, as can all recognised Civil Society Organisations. The unique character of the CRPD Committee, 17 of whose 18 members have a disability, makes the CRPD the first UN treaty to be created and monitored by the people it is designed to benefit. Accordingly, it takes full account of the views of organisations of persons with disabilities.

Full information on the COSP, CRPD, a list of ratifying countries as well as the UN Enable Newsletters can be found on www.un.org/disabilities in English and other languages.

The United States Congress has still not ratified the CRPD, though it participated in its drafting and President Obama’s signature commits the USA to its General Principles. These are:

  1. Respect for the inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of persons
  2. Non-discrimination
  3. Full and effective participation and inclusion in society
  4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
  5. Equality of opportunity
  6. Accessibility
  7. Equality between men and women
  8. Respect for the evolving capacities of children with disabilities and respect for the rights of children with disabilities to preserve their identities.

The UN 2030 Sustainable Development Goals (SDGs)

The main theme of this COSP meeting was “Implementing the 2030 Development Agenda for all Persons with Disabilities: Leaving No One Behind.”

The 17 Goals are: No Poverty; Zero Hunger; Good Health and Well-Being; Quality Education; Gender Equality; Clean Water and Sanitation; Affordable and Clean Energy; Industry, Innovation and Infrastructure; Reduced Inequalities; Sustainable Cities and Communities; Climate Action; Life Below Water; Life on Land; Peace and Justice: Strong Institutions; Partnerships for the Goals.

Because people with disabilities had not been mentioned in the original 2000-2015 Millennium Development Goals, Disabled Persons’ Organisations such as our friends at Inclusion International (www.inclusion-international.org) have worked hard and successfully to ensure that persons with disabilities were explicitly included in the indicators that have since been developed to check its progress.

DAI is applying to join the International Disability Alliance to make it clear that its advocacy includes us.

DAI has expressed its concern that people with dementia, especially in Low- and Middle-Income Countries, are at greatest risk of being Left Behind because they have not been involved in the drafting of policies to protect them. DAI will be raising this issue with the UN High Commission on Human Rights which monitors all human rights.

The four sub-themes for the COSP were:
  1. Eliminating poverty and inequalities for all persons with disabilities
  2. Protecting the rights of persons with mental and intellectual disabilities
  3. Enhancing accessibility to information, technology and inclusive development
  4. Celebrating the 10th Anniversary of the CRPD.

MY CONTRIBUTIONS, CONTACTS AND IMPRESSIONS

My name is Mary Radnofsky. I’m American. Although I was diagnosed many years ago, I’ve only ‘come out’ two months ago. I’m here to represent Dementia Alliance International. We ARE the voice of dementia: We speak for ourselves. 

Since DAI was founded by Kate Swaffer and six others in 2014, we have gained some 2000 members from across the world with a wide range of cognitive impairments and medical diagnoses of dementia, the most common being Alzheimer’s Disease. There are some 50 million people living with dementia across the world, and our numbers are set to double every twenty years because people are living longer.

Whatever our diagnoses, we are, like all of you, unique individuals. But all too often, we are stripped of that individuality at the point of diagnosis. We then become subject to the stigma, fear and ignorance that surrounds the complex and little-understood effects of this group of diseases on our day-to-day lives, in our homes, on our families and friends – effects which can lead to social isolation and the denial of our individuality.

My question was: “How can the CRPD help to eliminate culturally-systemic discrimination against people with disabilities, especially those of us who have felt that we’ve had to hide our condition rather than deal with our society’s stigma?”

As I was leaving the UN on my last day, a young man who works in the office of the UN Special Rapporteur on Disability told me that my comment regarding stigma associated with the disability of dementia was important, and the first time he had heard this issue raised. He assured me it would be included in his UN report.

Legal Capacity and Our Rights

Regarding “legal capacity” of individuals diagnosed with mental or intellectual disabilities, advocates stated that ‘substitute decision-making mechanisms’ must be replaced by ‘supported decision-making’ but these practices are on a continuum, and legal experts are split on where to draw the line.

The CRPD calls for laws which systematically allow – and often encourage – someone other than the person with the disability to make decisions on his or her behalf should be abolished. DAI maintains that decisions about competence should be based on impartial, independent assessments, such as yearly driving tests.

Klaus Lachwitz, President of Inclusion International and a lawyer, said that no country has thus far successfully implemented an assistive decision-making program that meets CRPD requirements. Several have tried but have merely substituted one decision making body for another. One complication is that people with dementia and mental and intellectual disabilities may want and need assistance. How and when to provide that assistance is difficult.

Teresa di Fiandra, from the Italian Ministry of Health explained that her country created a Support Authority to help people with decision-making – not to reduce their choices but to help them maintain autonomy as long as possible.

The Civil Society Forum

I sat in on a high-level political forum on the participation of people with disabilities, and a discussion of practical steps for implementation. When the floor opened for comments, I introduced myself as a person living with dementia and representing Dementia Alliance International, with the question,

How can people with dementia begin to participate in decision-making processes as well as in the implementation of these strategies, and become active participants or members of committees?”

Alistair de Gaetano, an expert in disability law and human rights from Dublin suggested joining advocacy groups and linking to larger networks to work on major projects together. The self-advocacy movement was a dominant theme at the conference: that is why we were there.

Several countries and organizations are highly supportive of DAI, contributing not only to our collective strength, but also to our individual mental and physical health. For example, Mohammed Ali Loutfy of Lebanon said that, despite many countries’ steps to recognize the CRPD, all governments must involve people with disabilities, because we are the experts on the conditions of our lives.

I spoke with several Italians and people from the tiny Republic of San Marino in central Italy. One of the delegates explained that when a child has a disability, there is respect for the child. The problem is that they are no longer respected when they become adults. Social attitudes must be changed.

Another Italian, Sebastiano Cardi, Vice President of the COSP, said that Italy had just adopted a new law to help people with disabilities in what he calls the “after” time, i.e., when parents or other caregivers die or leave. In other words, the state will help, but people with disabilities whose adult children care for them need back-up plans.

Speaking about the rights of women with disabilities, Judith E. Heumann, of the American Women with Disabilities Forum in Washington, DC, and advisor to Presidents Clinton and Obama, said that empowerment of disabled women is critical. In general, women with disabilities need to participate more in the electoral process, and run for political offices at all levels.

In all countries, including the US, people with disabilities are twice as likely to be un- and under-employed than non-disabled people. Yet research shows that across the board, people with disabilities boost a company’s productivity, engaging non-disabled colleagues in more creative work.

Several self-advocates with an intellectual disability from Inclusion International pointed out that many barriers to inclusion are often not due to their disabilities but rather to society’s attitudes; people with disabilities often don’t have enough choices and don’t get the needed support because other people simply don’t know or understand what those of us with disabilities find important. So it’s our responsibility to make our voices heard. Self-advocacy is key.

When Klaus Lachwitz, President of Inclusion International was asked what was missing from the dialogue on people with disabilities, he unflinchingly stated

 “What’s missing is the big group of people with dementia. We’re a generation of people getting older. We all know people with dementia… So all of these things have to be discussed, interpreted and described”.

GENERAL OBSERVATIONS

Prince Hussein of Jordan, who reported on advances in his country, commended the UN on refurbishing the General Assembly Hall but added that the high podium should be accessible. This was, after all, a Conference on the Convention on the Rights of Persons with Disabilities. The panel of officials had to sit behind a fold-up table at ground level, squeezed in front of the first row of delegates because there are a dozen stairs to get to the high podium!

Equally ironic and unfortunate were the elections for membership of the CRPD committee by Member States resulting in seventeen men and only one woman. This happened despite clear guidance from the UN that the Committee should be balanced for gender, ethnicity and location.

On a positive note, one of the men elected was Robert Martin, proposed by the New Zealand government, a self-advocate, and the first person with an intellectual disability to sit on the committee. He helped draft the CRPD and has been active in its implementation ever since.

It took ten years for a person with an intellectual disability to be elected. How long will it take for a person with dementia to join him? 

IMPLICATIONS FOR DEMENTIA ALLIANCE INTERNATIONAL

At DAI, we are uniquely situated to provide the expertise needed for these discussions. There is a role for all of us to play as we advocate for our rights and simply show how we can live well with dementia for many years.

So start to think about what YOU can do to improve the lives of people with dementia – including your own. You might want to print and mail out flyers, make phone calls, write or edit letters, do fundraising, put an ad in the paper or online for group events, record stories from people living well with dementia, speak to classrooms or clubs, assemble articles about brain research, post notices of drug trials and non-pharmaceutical treatments, attend support groups, share recipes, describe successful dietary and exercise ideas – above all, recruit new members to DAI!

I need DAI so I can maintain the quality of life that I’ve found through support groups and advocacy. DAI needs you because you can make a difference in the world for everyone whose lives you touch. Through letters, social media, phone, email, and in person, you can still reach a lot of people that need DAI too.

Let’s continue to help each other enjoy our lives, starting with our human right to medical care, living in our communities, and choosing how we want to be treated.

Thanks.

Mary L. Radnofsky, Ph.D.
June 28, 2016

Dementia Friendly Kiama, by Dennis Frost

Dennis Frost is a member of Dementia Alliance International and also the Inaugural Chair of the Southern Dementia Advisory Group in Kiama NSW, which guides the DFC pilot project between the Kiama Council, University of Wollongong and which Alzheimer;s Australia were also involved in nationally. Many consider this to be the gold standard dementia friendly communities project globally.

Dennis is from NSW and was a keynote speaker at the ADI20-16 conference in Budapest this year titled Dementia Friendly Kiama, which you can view here:

 

Please note: If you are watching this free video, and are employed or can afford to donate the fee you would have paid to attend on the day of $45 USD, please donate here – http://www.dementiaallianceinternational.org/donate/

DAI is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Membership of Dementia Alliance International is free, and open to anyone with a medically confirmed diagnosis of any type of dementia.

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