Category Archives: Human rights

Day 2 World Health Assembly #WHA71

It seems I may have implied I would write a blog for every day of the World Health Assembly this week, to report to members and others what has been happening in Geneva. Of course, this is quite an undertaking, considering the length of the days and the energy it takes to get through them, and to write a blog. But, I am attempting to live up to my promise!

The Alzheimer’s Society UK has renamed it’s annual awareness raising week to Dementia Action Week, and it is unusual this year that this coincides with the 71st World Health Assembly and the 70th birthday of the World Health Organisation, almost blurring the topics on which to write about.

But of course, we all want Action.

We, meaning those of us diagnosed with dementia, have been waiting for ACTION for many years. Perhaps what I am sharing now, will lead to real action, for all people with any type of disability, including those caused by dementia.

Hence, this blog is not about reporting on the sessions I have been attending or involved in today specific to Day 2 of the 71st World Health Assembly, which I had promised, but rather, to report on a new venture, that DAI has been involved in, and is now a key part of.

For me personally, as I have been advocating for rehabilitation for dementia for many long years, it felt like the best day of the last 10 years of my life, since my diagnosis at the age of 49!

This new Association, The Global Rehabilitation Alliance  was born from the meeting in Geneva which I attended representing DAI in February 2017, REHABILITATION 2030: A CALL TO ACTION,  and the work and global collaboration since this forum.

Many do not yet believe rehabilitation and dementia go in the same sentence, including many rehabilitation specialists, in spite of there being very good evidence for it as far back as 2008 (possibly further, but my energy to research this any more is low!).  

The participants of the Rehabilitation 2030 meeting in 2017 committed to strengthening health and social systems to deliver rehabilitation services.  Strong global advocacy will be vital to the successful implementation of this goal, and this new group hopes to do just that.

Historically, however, rehabilitation stakeholders have been fragmented and lacked a unifying platform for strong and consistent messaging and collaboration. The Alliance aims to fill this critical gap, bringing together motivated and committed stakeholders across disciplines and spheres of influence towards a common vision. 

 The Global Rehabilitation Alliance Vision Statement:

The Alliance envisions a world where every person has access to timely, quality and user-centred rehabilitation services.

Dementia Alliance International is now a founding member of this new Association, and together, we now have an opportunity to influnce key staeholders in the value of rehabilitatin for all people with dementia. I don’t currently have the full list of the 14 founding member organisations, but it includes the World Federation for NeuroRehabilitation (WFNR), World Federation of Chiropractic (WFC), the International Society for Prosthetics and Orthotics (ISPO), the ICRC MoveAbility Foundation,  Humanity & Inclusion (HII), the World Confederation of Physical Therapy, the  Global Alliance for Muscoloskeletal Health (GMusc), and DAI!

DAI is in a unique position to ensure people with dementia are afforded the same rights to rehabilitation as all others, and can now very loudly demand rehabilitation in National Dementia Strategies or Plans, and Clinical Dementia Guidelines.

I’m sure those without dementia will not really understand the significance of this, but for me and I am sure many others living with dementia who have been denied easily accessible and affordable rehabilitation, it heralds the start of a new era, where people with invisible cognitive and other disabilites due to their dementia will also be incuded in the global push for accessible and affordable rehabilitation for all.

Onwards and upwards, together, fighting for our #Rights4All

Kate Swaffer
Demantia Alliance Inernational
Chair, CEO & Co-founder

 

The group photo below is of the 14 founding organisations, names and all orgnisations to be provided as soon as possible!

 

 

 

DAI supports Canada to develop a National Dementia Plan

 

On May 14-15, 2018, a great number of DAI members, and others with dementia attended the National Dementia Conference, hosted by the Canadian Government. I was privileged to be invited and to give a short speech, and was honoured to be on the same program as Mary-Beth Wighton and Phyllis Fehr.  Their speeches will follow in another blog very soon.

One of the highlights for me was meeting so many of my ‘online’ friends in person, and many of us said goodbye with joy, and tears.

The photo above is of the conference  delegates living with dementia, and the government officials and staff who organised it, including the Canadian Minister of Health, Ginette Petitpas Taylor, MP, who attended on both days.

She is also attending the World health Assembly in Geneva this week (we met in the corridors of the UN), so who knows, I may have an update or even a ‘selfie’ to post here!!!

We are extremely proud to announce here that Mary Beth Wighton, one of the founders of the Ontario Dementia Advocacy Group (ODAG), and current Chair was selected, along with Jim Mann, to be full members of the Ministerial Dementia Advisory Group.

Both are members of DAI as well. We have no doubt they will influence the national plan and if necessary, forcefully ensure it is embedded with rights for all. We congratulate them both, and all people living with dementia in Canada for their passion and drive.

Clearly, the most important elements of any National or Local Dementia Strategy or Plan are our basic human rights.

  • Human rights
  • Disability rights
  • Access to a timely diagnosis
  • Access to care and support that promotes independence
  • A new post diagnositic care pathway or ‘model of care’  that is a blend of health care and disAbility support
  • Rehabilitation assessment and support, at the time of diagnosis, for all people with dementia, including speech pathology
  • Disability assessment and support at the time of diagnosis
  • Access to education and care for our families and care partners
  • Education for everyone working in or impacted by dementia
  • Moving away from any form of chemical or physical restraint
  • National Risk reduction strategies

For me, this includes full support for all people with dementia to attend (any event or conference) financially, to ensure full and equal inclusion and participation, as well as full support for our cognitive and disabilities. This is a legal right, not just a human right.

The following are my speech notes and as my ‘brief’ was rather limiting, I decided to broaden the elements of my speech:

Slide 1: People with deMEntia in Research Ethical Considerations 

Thank you for the invitation to join this conference, and the panel today.

Slide 2: Global Overview of deMEntia

  • 50 million people living with dementia
  • 1 new diagnosis every 3 seconds
  • The cost of dementia is estimated to be 818 billion dollars
  • The majority of care is provided by unpaid family care partners
  • Dementia is the 7thleading cause of death globally
  • In Australia, it is now the leading cause of death in women, and the 2ndleading cause of death of all diseases
  • Dementia disproportionately effects women, in terms of the numbers diagnosed, and the number of unpaid family care partners
  • Stigma, discrimination, the deeply entrenched myths about people with dementia, and the

Overview of DAI, which was launched on January 1, 2014 by 8 people with dementia, including one from Canada:

  • Membership now spans 47 countries
  • The services and support available to members and the broader dementia community is provided free for members, and on an annual budget of less than $50,000 USD – for the first 18 months, DAI was completely self funded
  • We still self fund much of our human rights and global work, including supporting countries with their national dementia plans, such as my trip to Canada
  • Global impact on the WHO Global Dementia Action Plan, human rights and dementia being seen and treated as a disability – before we started advocating, there was little more than rhetoric about rights
  • DAI provides significant information and support to members within their own country Dementia Advisory Groups, such as the Ontario Dementia Advisory Group
  • Our members now need Alzheimer’s Associations and other organisations to partner with us, as Alzheimer’s Disease International has, to complement the services and support they provide

Slide 3: Living with deMEntia

When I was diagnosed in 2008 at the age of 49, the advice I was given was to go home, give up work, give up study, get my end of life affairs in order, and to get acquainted with aged care

The challenges of a diagnosis of deMEntia in 2018 are much the same! Most new members of DAI and others I meet with dementia around the world tell me nothing has changed. Both Mary-Beth and Phyllis have told us this was true for them as well.

Human rights and deMEntia

  • It is a breach of our most basic human rights not to be supported to live as positively as possible with dementia
  • It is no different our care partners and families receive little or no support
  • It is a breach of our human rights not to be provided with post diagnostic support that includes rehabilitation, including speech pathology when we are first diagnosed for speech and language impairments, not at the end of life when we can’t swallow and are almost ready to die
  • The WHO states dementia is the leading cause of death and disability in older people – yet so far, service providers and health care professionals do not actively support our disabilities with strategies to maintain independence for as long as possible
  • As a mature age student at a university when diagnosed, I was proactively supported to keep living my life, with proactive disability support, as my children would have been if they were living with any type of disability
  • It is imperative there is nothing about us, without us; including in research

I trademarked what happened to me 10 years ago as Prescribed Disengagement®. Unfortunately, I have hundreds of examples of anecdotal evidence this is still happening to the majority of people after diagnosis today.

It is a human rights issue that must be addressed in all national dementia plans and strategies, in the provision of health care, and in policies and services. I was the first person with dementia to speak as an invited keynote speaker at the WHO, which is a specialised agency of the United Nations in March 2015. Since then, much has happened, including the unanimous adoption of the WHO Global Dementia Action Plan: A Public Health response to dementia 2017-2015. The only truly accountable section of this Global Dementia Action Plan, adopted at the WHA in May 2017 are the cross cutting principles. I personally believe Taiwan has led the way; Canada could be next, if you get it right now.

Redefining responses to deMEntia

  • Janssen Pharmaceutical developed the term BPSD, and funded the first guidelines; they invested a lot of time and money promoting this through clinicians and researchers
  • This paradigm has likely caused worse care, ensure we do not provide person centred care, and resulted in chemical and restraints being used to manage the responses to dementia or responses to poor care that people with dementia express

Slide 4: Human Rights, Research & deMEntia

Ethical considerations of involving people with deMEntia in research clearly include causing no harm to research participants. Historically, research was done about us, through our care partners, unless it was pure scientific research for a cure or a disease-modifying drug. It is still very difficult to get ethics approvals when including people with dementia I research, which I know from personal experience as a ‘young’ researcher.

For example, in an Annual Report on stigma published in 2012, only 7% of people with dementia were included in the research participant cohort – the rest were families, hence this report does not report on the stigma we feel, but what other believe we experience, which is significantly biased by their own suffering.

Managing the gate-keepers continues t be a challenge, as the paternalistic views about us, and the subconscious beliefs and attitudes about us not having capacity or sufficient cognitive ability to be involved in society, let alone in research, is endemic. Even today, most decisions made for or about us, are deeply influenced by people without dementia. In my role as the Chair and CEO of Dementia Alliance International, I can tell yo we receive on average, 5 requests per week from researchers to engage with our members, as they cannot get either the family members to agree to involve us, or the advocacy organisations to share the opportunities for participatory research.

The wellbeing of research participants with deMEntia should be important to everyone, and especially if a trial ends or fails, no care is provided post trial for the research participants. DAI members report that when a trial is either stopped, or comes to an end, they are ‘dropped like hot pancakes’. This is unethical, and could be seen as a human rights issue as well.

People become involved in trials, not only in the hope of finding a cure for themselves, but for future generations. Research for a cure, but even more so for better care, and for risk reduction or slowing the progression of dementia are of great interest to most people currently diagnosed. We need to be supported emotional, physically and financially to be involved in research, and we need research opportunities made publicly available to us. We also need pharmaceutical companies and the media to stop selling false hope!

Involving people with deMEntia in National Dementia Plans and Strategies

Finally, in everything you do, I implore you to SEE THE PERSON, NOT ONLY THE DEMENTIA. We are human beings, with a condition causing changing capacity and functional disabilities.

Given the right support, and equal opportunities to all other persons with an acquired disability, we have a lot to contribute, not only to research, but also to society as a whole.

Thank you.

Kate Swaffer, DAI Chair, CEO & Co-founder

My slides can be downloaded here: Kate Swaffer_National Dementia Conference_Canada_May_2018

 

 

DAI in Top 20 Dementia YouTube Channels in 2018

Dementia Youtube Channels List.

“The Best Dementia Youtube Channels from thousands of Dementia Youtube Channels in our index using search and social metrics. We’ve carefully selected these youtubers because they are actively working to educate, inspire, and empower their audience with frequent updates and high-quality videos.

This is the most comprehensive list of best Dementia Youtube Channels on the internet and I’m honoured to have you as part of this! I personally give you a high-five and want to thank you for your contribution to this world.

These Youtube Channels are ranked based on following criteria

  • Total youtube channels subscribers, video views, and video uploads
  • Quality and consistency of videos
  • Youtube search ranking
  • Feedspot editorial team’ objective and subjective review”

DAI received an email yesterday announcing we had  made the Top Dementia Youtube Channel list for 2018.

Firstly, SINCERE CONGRATULATIONS to every other youtuber who has made this Top Dementia Youtube Channels list!

We are very proud to have made this list. Without the generosity of so many supporters, academics and professionals, willing to present to our members and supporters at monthly Webinars, and our members always willing to share their stories and presentations, we could not provide the truly authentic content we have on our YouTube channel.

The most impactful voices in the global activism for dementia and rights at places like the WHO and UN, has been the voices of people with dementia, most often through DAI.  DAI started the global activism and campaign in March 2015 at the WHO First Ministerial Conference on Dementia in Geneva.

Our YouTube channel has also contributed to our work, and to supporting so many others facing dementia, or academics and proessionals working in the field. If our YouTube Channel has positivley impacted your life or work, please consider donating.

Thanks to everyone from all of our members for helping us get to where we are today, and for making this award possible.

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)

ADI Chicago abstracts due soon

If you are thinking of submitting an abstract to attend the ADI 2018 conference in Chicago, abstract submissions close very soon. If you are unsure about presenting at conferences, or writing an abstract, please go to our blog which has some guidelines about the process here…

DAI does hope to be hosting its regular 90 minute workshop again as well.

The ADI Abstract submission is open. ADI welcomes scientific and non-scientific abstracts on a range of research, care, technology and innovation topics. Please see below for the list of abstract topics and further guidance before submitting. To facilitate abstract submission for people with dementia, we have also created a paper submission form. If you would prefer to submit in this way, please contact Katie Bingham at [email protected] to request the form.

Alternately, contact us at [email protected] and we are happy to assist you with preparing and submitting our abstract.

Abstract topics

  • Awareness and stigma
  • Carer support and training
  • Dementia friendly communities
  • Dementia policies and public policy initiatives
  • Diagnosis and imaging
  • Diverse populations – inclusion and equality
  • Education and training of the workforce
  • End of life care
  • Engaging people living with dementia and care partners
  • Environment and technology
  • Epidemiology
  • Mild cognitive impairment (MCI)
  • Models of care
  • Prevention (risk reduction and risk factors)
  • Psychosocial interventions
  • Rights of people with dementia
  • Technology, innovation and entrepreneurship
  • Treatments and clinical trials
  • Well-being and quality of life
  • Younger onset dementia

Happy 4th Birthday DAI

On January 1, 2018, we at Dementia Alliance International celebreated our fourth birthday.  We have definitely come a long way following the aspirations of our founders, and although we have achieved quite a lot, DAI still has much work to do. We welcome you to join us in any or all of our work, and can be contacted here.

As we have many new members who may know very little about us, our first blog for 2018 is to share a piece added to our Facebook page, titled “Our Story”, which you can read in full below. There is a lot of other historical information which one day we will collate and publish, but for now, this is who we are:

Dementia Alliance International (DAI) is the world’s leading organisation exclusively for people diagnosed with any type if deMEntia[i]. It is an advocacy and support group of, by and for people with deMEntia. We are “the global voice of dementia,”, currently representing 44 countries. DAI is a 501c3 registered charity in the USA.

DAI’s vision[ii] is “A world where people with deMEntia are valued and included”.

DAI started instinctively, after many years of discussions with organizations and then others diagnosed with deMEntia, for the purpose of self-advocacy. When our founding members[iii] were each diagnosed with dementia, they individually experienced “the degenerating sense of ‘nobodiness’”[iv] that civil rights leader, Martin Luther King, Jr. had already recognized in another disenfranchised group, the mid-20th century African-Americans.

From day one of our organisation, we have had Margaret Meade’s quote on our website, and we continue to work hard to prove this to be true:

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

Collectively, we at DAI realised we had to struggle with multiple challenges: not only medical, but also many based on social stigma and discrimination, related to changes to our cognitive ability. So we began to articulate the unfair, hurtful, de-humanising injustices imposed upon people with deMEntia.

The task of speaking out against people causing us harm is complicated (and sometimes precluded) by the fact that many of them are well-intentioned medical staff, service providers, advocacy organisation and close friends or family who are also often our care partners[v], but who may be ignorant, unwilling or unable to take the time to find out our wishes and needs. Although we are grateful for the support of family and friends, we have sometimes been demonized for needing them.

We have also been demonized for not needing them, and for daring to live positively with deMEntia.

People with deMEntia historically are written about as if we “suffer” from it, and are labelled a “burden” to society and have been labelled with all manner of other disrespectful terms. We ask others to use respectful language[vi][vii] when talking to us, or when or writing about us.

What we suffer from is the dehumanizing language many use to refer to us, and “the worst care in the developed world.”[viii]

We at DAI therefore believe it is imperative to change misperceptions about dementia, address stigmas associated with it, discourage the detrimental psychological and physical abuse of people with any disAbility[ix], and demand that the voices of people with dementia be included in decisions directly affecting us.

The misguided under-estimations of our potential continue to create oppressive and humiliating barriers to our full engagement in society. Some of us have even been publicly accused of being imposters, on the grounds that no one with dementia could address an audience of professionals at an academic or medical conference, or live positive and productive lives. Perhaps the worst myth we experience is that others expect that people with deMEntia will go from diagnosis immediately to end stage dementia. This myth is endemic.

One DAI co-founder, Kate Swaffer is regularly quoted saying:

“There is a systemic and gross underestimation of the capacities of all people with dementia, even in the later stages of the disease.” 

Hence we have begun to individually and collectively advocate and educate more enthusiastically, locally, nationally and internationally, at professional conferences, and in the vast online communities we have built.

We are dedicated to empowering all people live a better life with dementia, and not just to die from it.

We advocate for our rights of equal and full inclusion in public spaces and activities; we educate the public on our human-ness in the face of cognitive disAbilities, so that we are not reduced in legal or social status. We seek to live well (just as all people do – that’s the point), to be valued for who we still are, and to be included as equal citizens.

Our global focus has been on human rights and disAbility rights, and we continue to work with organisations such as the World Health Organisation (WHO), the United Nations, the Conventions Of State Parties and others, to ensure that since the WHO Global action plan on the public health response to dementia 2017 – 2025[x] was adopted, national, regional or local dementia plans will include human rights.

This is why we continue to advocate at the grass roots level, and have become activists in the global space, for better care, to ensure deMEntia no longer receives the worst care of any disease in the developed world, or indeed, anywhere in the world.

References

[i] We spell deMEntia like this, to highlight the person, not the disease

[ii] Dementia Alliance International, 2017, About DAI: Vision, https://www.dementiaallianceinternational.org/about-dai/vision/

[iii] Founding members: Kate Swaffer, the late Richard Taylor, Amy Shives, Susan Stephen, the late Dena Dotson, Steve Ponath and Janet (Pitts) Ford.

[iv] King, M.L., Jr., 1963, “Letter from a Birmingham Jail”, http://www.africa.upenn.edu/Articles_Gen/Letter_Birmingham.html

[v] Care partner: often referred to as carers, caregivers or significant others. We use the more empowering term, care partner

[vi] Dementia Australia, 2017, Dementia Language Guidelines, https://www.dementia.org.au/resources/dementia-language-guidelines

[vii] DEEP, 2018, Dementia words matter: Guidelines on language about dementia, http://dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf

[viii] The Organisation for Economic Cooperation and Development’s published report of the world’s 38 richest countries (OECD, 2015, Addressing Dementia: The OECD Health Policy Studies, OECD Publishing House, Paris).

[ix] We spell disAbility like this, to highlight the Abilities people with dementia or other disAbilities we retain.

[x] WHO, 2017, Global action plan on the public health response to dementia 2017 – 2025, http://www.who.int/mental_health/neurology/dementia/action_plan_2017_2025/en/

UNIVERSAL HEALTH COVERAGE DAY 2017

A GLOBAL DAY OF ACTION

“From the Universal health coverage is a political goal rooted in the human right to health. But no right has ever been guaranteed until people decided to fight for it. Now is the time to rise for our right to #HealthForAll and drive courageous political action in every nation.”

UNIVERSAL HEALTH COVERAGE (UHC) DAY

“On 12 December 2012, the United Nations unanimously endorsed a historic resolution urging all countries to accelerate progress toward universal health coverage as an essential priority for international development.

UHC Day has become the annual rallying point for the growing global movement for health for all. Each year on 12.12, we raise our voices to share the stories of the millions of people still waiting for health, to call on leaders to make bigger and smarter investments in health, and to remind the world that health for all is imperative for the world we want.”

THE IMPORTANCE OF UHC FOR DAI

DAI has been in Sharjah this week at the NCD Alliance Forum, and on Day 2, talked about human rights and social justice for people living with NCD’s, including people with dementia. We will post another update on this forum soon. It is especially important for people with dementia and our families, as we still don’t get adequate support after diagnosis, and getting a dagnosis in the first place is sometimes almost impossible. Our families are left to struggle with little or no suport, and with virtually no training on how to support us. The very last straw is that far too many health care staff are very ‘under-educated’ in dementia. This needs to change, and so together, it is time to stand up, speak out, and demand action!

We all must speak up for our right to universal and affordable health coverage.

 

NCD Alliance Forum in Sharjah update 1

Today the world celebrates and acknowledges the 70th Human Rights Day, and it was fitting that as DAI’s Chair and CEO, I presented on Day 2 at the NCD (Non Communicable Diseases) Alliance Forum Workshop in Sharjah on the topic of Human Rights and Social Justice. We must all  and I was truly shocked by one of the tweets from the UN, as pictured here:

The United Nations website states the following about Human Rights Day:

“Human Rights Day is observed every year on 10 December – the day the United Nations General Assembly adopted, in 1948, the Universal Declaration of Human Rights. This year, Human Rights Day kicks off a year-long campaign to mark the upcoming 70th anniversary of the Universal Declaration of Human Rights, a milestone document that proclaimed the inalienable rights which everyone is inherently entitled to as a human being — regardless of race, colour, religion, sex, language, political or other opinion, national or social origin, property, birth or other status. It is the most translated document in the world, available in more than 500 languages.” Source: http://www.standup4humanrights.org/en/

Promoting the meaningful involvement of people living with NCD’s

Thank you to the NCD Alliance for this invitation to speak today. I’d like to start by briefly outling the global statistics on dementia, and a some background of DAI.

  • > 50 million people in the world estimated to be living with dementia (WHO, 2017)
  • These numbers are expected to triple by 2050, to152 million (WHO, 2017)
  • 1 new diagnosis globally every 3.2 seconds (WHO, 2015)
  • > 130 types or causes of dementia
  • Alzheimer’s Disease makes up 50-70% of all dementias
  • Dementia is a terminal, progressive chronic illness
  • No cure
  • No disease modifying medication
  • Some medication for AD that may slow the progression
  • Medical model of care no longer appropriate

Many of you may not have heard of Dementia Alliance International (DAI), which was established on January 1 , 2014. DAI is a global advocacy and support group, of, by and for people with dementia, and the peak body for, and global voice of people with dementia, and represents members in 44 countries. We are also  a registered 501c3 charity in the USA.

DAI is in a strategic but autonomous partnership with Alzheimer’s Disease International who also are our pnly sponsor, and DAI was completely self funded for the first 1.5 years, and still relies on some self funding for much of its work.

Eight people with dementia co-founded DAI. Some of the reasons were to ensure people with deMEntia have a voice of their own, to empower others with deMEntia to live positively with it, rather than just go home and die from dementia, to provide grass roots support through peer-to-peer support groups and other online activities, to promote self advocacy, and importantly, to lobby locally, nationally and globally for a right based approach to dementia.

The voices of people living with NCD’s

The voices of people living with NCD’s are imperative, and of course, include people with dementia. One of my personal goals is also to empower people from as many countries as possible to speak up for themselves.  In my book “What the Hell Happened to my Brain: Living beyond dementia” (2014), I talked about the value of really listening to people’s stories:

“Before writing and setting up my blog I hadn’t realised how important it might be to create a shared space where other people with dementia could talk of life, illness, dementia and other our ever-deteriorating abilities, where I could discover in the witness of others (readers, rather than critics) how my stories had been heard. The insightful writer Joel Magarey, author of Exposure felt his words had not been rendered alive until acknowledged by the reading and response of his soul mate and lover, whose compassion and timbre with him is described with such gracefulness in the book. He writes:

As I imagine myself saying the words to Penny, they seem to gain the significance I want them to have as if only when I tell her of these solitary experiences will they come to truly exist.” 

Such ‘listening’ reading requires philosophical and considerate silence allowing the author to speak to the imagination of the reader, and from the heart. It is not a substitute for more critical reading but can be a valuable source of artistic enrichment. We live until we die. For the most part, I try to live as well as possible, and to enjoy the days I am alive.”

This extract seemd important to share, in light of the young speaker yesterday who shared her own personal stories, and resonated with the NCD Alliance publication, Our Views Our Voices, as they seek to the personal stories of people living with any type of NCD.

Living with dementia has further developed my sense of social justice, and I often liken the experience of advocating for my rights (and the collective rights of all with dementia) like Rosa Parks, who refused to sit in the black section of the bus. Dr Martin Luther King Jnr. is another of my mentors, and his quote, “Our lives begin to end the day we become silent about things that matter” is one tht I regularly refer to.

Re-defining dementia

In advocating for dementia, I have seen the need to highlight various definitions, and believe we need to move away from the purely medical definition: “Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities.” (Mayo Clinic, 2017).

I therefore feel we must re-define dementia, and offer three alternate examples:

  1. “We are just changing in ways the rest of you aren’t, we have increasing disabilities, the better for all of us living with dementia. We desperately need others to enable us, not further disable us!” (John Sandblom, 2013)
  2. “Dementia is a shift in the way a person experiences the world around her/him.” (Dr A Power, 2016)
  3. “People with dementia have changes in their brain that although progressive, equate to acquired cognitive disabilities.” (Kate Swaffer, 2017)

Following a diagnosis of dementia

What happened to me when I was first diagnosed, which I have termed Prescribed Disengagement®,  is not only illogical, it is a reach of human rights, and is still happening today. I was literally told to:

Go home, give up work, give up study, get my end of life affairs in order, and get acquainted with aged care.”

Dementia is the only illness I know where people are told to go home and prepare to die via aged care rather than fight for their lives!  The cost of this Prescribed Disengagement®  is a sense of hopelessness, and no sense of being able to live positively and no sense of a future. It makes it easy to assume victimhood and assume learned helplessness, and further disables and disempowers us. It definitely ensures we believe there is nothing we can do to slow the progression.

Why a rights based approach to dementia

We need a rights based approach to dementia becasue we are still applying late stage disease ‘management’ to earlier stage diagnosis, we have ignored human rights in favour of ‘consumer safety’, we have ignored human rights in favour of organisational risk management, and I believe, it’s also been convenient…

On December 10, 1948 the Universal Declaration of Human Rights was adopted by the General Assembly of the United Nations. The UN Convention was (still is) meant to protect every single member of civil society in the world… Including people diagnosed with any type of a dementia, and who have disAbilities caused by the symptoms of their dementia.

67 years later, the Organisation for Economic Co-operation and Development (OECD) report Addressing Dementia: The OECD Response concluded:

“Dementia receives the worst care in the developed world.” (2015)

This OECD report also confirmed why it was necessary to demand a human rights based approach to dementia at the WHO in 2015, which includes full access to the CRPD and rehabilitation. Globally, we are lobbying to phase out all institutional care, and also secure dementia units. Locked facilities or wards simply equate to  segregation, based on an illness, and the only other people we lock up ‘for their or our safety’ are convicted criminals. I also believe:

“There is a systemic and gross underestimation of the capacity of all people diagnosed with deMEntia, even in the later stages of the disease.” (Kate Swaffer © 2014)

Finally, and very importantly, we know that most of the NCD’s are also major risk factors for dementia, and as one of DAI’s slogans says, ‘Together, we are stronger’.

Thank you.

Celebrating the International Day of Persons with disAbilities

Today is “the annual observance of the International Day of Disabled Persons (IDPD)” which “was proclaimed in 1992, by the United Nations General Assembly resolution 47/3. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of political, social, economic and cultural life.

The main programme of the observance of the International Day of Persons with Disabilities at the UN Headquarters in New York will include the Opening, panel discussions and cultural events. Member States, civil society organizations and the private sector are welcome to organize their own events to celebrate the International Day to raise awareness and promote the rights and perspectives of persons with disabilities around the world.”

The theme for IDPD 2017: “Transformation towards sustainable and resilient society for all” 

DAI and many others have worked tirelessly to ensure our rights as person with disabilities are being observed, and last year, following the mhGAP forum in Geneva, we were delighted a fourth category under the Mental Health umbrella where we sat, now includes a fourth category of persons with cognitive disabilities.

We lobbied for this in 2016 because dementia is not a mental illness, it is not an intellectual disability, and it is not a psychosocial disability, and were joined by Autism International, as people with autism do not fit into those categories either.

DAI also attended the mhGAP Forum in 2017, with a focus on the Global Action Plan for Dementia adopted at the World Health Assembly in May this year. It is pleasing this plan includes seven cross cutting principles, and we’ve also been working with some countries to develop their Nationa Dementia Plans, with the goal of ensuring CRPD, SDG’s, CBR and other relevant issues are being included.

For the second year in a row,  Dementia Alliance International has also been granted Observer Status membership  of The International Disability Alliance (IDA), and will continue to actively work towards full membership status. Whilst we may not like a second ‘negative label’, ensuing the symptoms of any type of dementia are seen and treated as disAbilities, potentially will have to change the focus away from the current deficits based model of care, to one based on a psychosocial and disAbility pathway of support.

After all, whilst we are people living with a progressive, chronic and fatal neurological condition, the symptoms of dementia must be seen and supported as disAbilities, to ensure we can live as positively and independently for as long as possible. Who knows, one day, the work by Professor Dale Bredesen and others in reversing dementia may even become mainstream???

Announcing the 2018 DAI Board & the AGM Chairs Report

This week DAI held it’s third (or fourth?!) Annual General Meeting where we elected in new members to join the 2018 Board of Directors.

Although not officially in their roles until January 1, 2018, we are very pleased to announce who they are today. Three board members have also agreed to continue on in their Executive roles, and David Paulson was elected and accepted the position of Vice Chair.  As always, we thank the current board for their commitment and passion, and our outgoing board members. In January 2018, we will also publish our full Annual Report.

The incoming 2018 Board of Directors will be:

  1. Kate Swaffer, Chair & CEO
  2. David Paulson, Vice Chair
  3. John Sandblom, Treasurer
  4. Eileen Taylor, Secretary
  5. Maria Turner
  6. Phyllis Fehr
  7. Jerry Wylie
  8. Bill Turner
  9. Agnes Houston
  10. James McKillop
  11. Alister Robertson
  12. Carole Mulliken
Volunteers: Sarah Yeates and Karen Bland (and soon, hopefully Leah Bisani!)
We would also like to thank Ian Gladstone and Valerie Schache (Val has been a co-opted board member this year), the two DAI members who were not elected as 2018 Board  members, but who we hope will become or continue as active members in leadership roles, including as ‘shadow’ board members’. We thank them sincerely for nominating for the 2018 Board.
For those who could not attend the meeting, you can read the Chair’s Report here:

Chair’s Report, AGM, November 14/15, 2017

Welcome to everyone, and my sincere thanks to members of the board for 2017 for their hard work and commitment to DAI. Special thanks also to outgoing 2017 board members, Brian Le Blanc and Mick Carmody who stepped down earlier in the year for personal and health reasons  and to the board members who are continuing on.

As we come to the end of another very busy year of advocacy and activism by DAI members, and others, either collectively or individually, I would like to thank everyone for their energy and efforts for all people with dementia. Today we hold our annual Annual General Meeting, and this year we have six nominations for four vacancies. This is such progress from our small start by 8 people diagnosed with dementia wanting to advocate as a global team. I’m proud of what we have achieved, our past and current Board members and Action group members, and am looking forward to the 2018 team being voted in.

Membership currently remains exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world, and we continue to seek to represent, support, empower and educate others living with the disease, and the wider dementia community, and are an organization that strives to provide a unified voice of strength, advocacy and support with a dream for individual autonomy and improved quality of life for people with dementia and our families supporting us.

On behalf of us all, my very special thanks must go to our very hard working and loyal DAI volunteers. We could not have done it without them, and are indebted to tem for this support. Sarah Yeates continues to support DAI by attending the board meetings and AGM and providing the Minutes, as well as other business and operational advice, and is also helping us with the Strategic Plan. Thanks also to Karen Bland for her volunteer work and support with the support groups.

The Richard Taylor Memorial Advocates Award
On World Alzheimer’s Day, September 21, we announced the winner of the 2017 Richard Taylor Memorial Advocates Award.  Our long time member and a dear friend to so many around the world Susan Suchan was the recipient this year, and her incredible passion and drive to be a voice for those losing theirs, especially with PPA has been extraordinary, and has continued in spite of her rent diagnosis of cancer. DAI also sends Susan and her family our love at this difficult time.

World Alzheimer’s Month 2017
This year, we were less frenetic than in 2016 when we posted a daily blog, but importantly, we held our first public Seminar, also held as an online Webinar, co-hosted with the Dementia Advocacy Advisory Team in Brisbane, and supported by BlueCare, a service provider in Queensland. It was very successful, and included a powerful presentation from the two daughters of a mother with YOD now in aged care. This will be available on YouTube very soon.

Conferences and other events
DAI members were well represented in Kyoto at the ADI conference in April, and again at the ADI Regional meeting held in conjunction with Alzheimer’s Indonesia. We hope to have strong representation at the ADI conference in Chicago next year, and again will support members who have never attended to submit abstracts.

I have represented DAI in my role previously titled the SE Asia Regional ADI Ambassador at a number of meetings in Taiwan, Japan and Indonesia, supporting their local Alzheimer’s offices to empower people with dementia to self-advocate. After a number of years of supporting NZ, we are thrilled they have recently set up their own Dementia Advisory Group of people with dementia; Taiwan is close to doing the same. In Taiwan, I also met with governments, the department of criminal justice on rights of people with dementia and the President of the Control Yuan, and am working closely with them on their national dementia strategy, as well as speaking at many public meetings. Taiwan and Indonesia this year, have had people with dementia speaking publicly for the first time.

Human Rights Update
Our work on claiming the Human Rights for all people with dementia means we are legally entitled to be included, and not just consulted, or represented by others. We are also entitled to the appropriate disability support that any other persons or groups of disabled people are afforded. DAI works as an independent self-advocacy organization of people with dementia which is in a strategic partnership with Alzheimer’s Disease International (ADI), and where collaboration is also possible with all national Alzheimer’s organisations and national or local Dementia Working Groups. We work actively with the Dementia Working/Advisory Groups and other local or national groups, as requested by them to support their local or national work, or our global work.

 It was exciting to attend the World Health Assembly in tandem with Peter Mittler, so that someone from DAI was there when the WHO Global Action Plan: A Public Health Response to Dementia was unanimously adopted in May. This was a big step, but there is a lot of work to be done by everyone, including by DAI towards the implementation of the Action Plan.

A number of members have also been busy with the continued pursuit of a human rights based approach to dementia, and many people with dementia have attended various WHO meetings or forums in Geneva. DAI has also become a full member of the Conventions of State Parties, and in March 2018, will apply to be in official relationships with the WHO. We have also been working with them by attending events and workshops in the implementation of the Global Dementia Action Plan adopted in May 2017.

DAI and ADI jointly produce a document Access to CRPD and SDG’s by Persons with Dementia, to present to ADI council members at the ADI conference in Kyoto, including a workshop for members on how to implement the CRPD for people with dementia in their countries.

DAI has made a number of submissions this year, including one this week to the WHO highlighting the draft of the 13th General Programme of Work 2019-2023 does not include people with dementia or older persons. We regularly co-sign letters written by the LEAD Coalition in the USA, in an effort to improve health care in the USA, and recently submitted a DAI letter to the U.S. Department of Health and Human Services, the Office of the Assistant Secretary for Planning and Evaluation Strategic Planning Team regarding their Strategic Plan on behalf of our members in the USA. In this letter, we highlighted the opportunities for their draft Strategic Plan to be more specific about strategies for diversity in clinical trials and research as well as strategies for improving quality of life among people with Alzheimer’s disease and other forms of dementia

The Older Persons Convention is currently under review, and we are also working towards ensuring it is aligned to the CRPD, and in which we hope the final draft will reflect this as well as include dementia.

Dementia Working Groups
This year, we acknowledge and congratulate the newly founded 3 Nations Dementia Working Group which represents England, Ireland and Wales was launched in May. New Zealand also just launched their first Dementia Advisory Group of people with dementia. The JDWG is becoming involved in global human rights work, and the OADG continues to work hard to turn human rights from rhetoric to action in Canada. Many national and local Dementia Working Groups are either increasing their presence, or being set up, ensuring the voices of people with dementia and our families are being heard.

A Meeting Of The Minds Webinars
We have had an excellent year of events with many international speakers, and the program for 2018 is already in progress. Next week, we focus on OT, and in December, we will host two social events, one to celebrate Christmas, and the other, and online Faith service for those members who no longer wish to attend their local Church. If there are topics, or certain speakers you would like hear from next year, please let us know.

Fundraising
Fundraising has been slow this year, but I wish to officially and personally thank every single person who has donated to DAI. Whether is it $5 or $500, every amount counts, and what we can do with 20, most other organisations would need more than $2000! We have to make the small funds we have stretch a long way, and also must keep funds in reserve for our future. Our fundraising team, also part of the Action Group are getting organised for campaign to get as many members to Chicago for the ADI conference in July next year as possible.

We also acknowledge and thank ADI for their ongoing support, strategic partnership  and sponsorship.

International Disability Alliance
We applied for membership of this organisation, as it will give us a much better grounding in our human rights and disability focus, and we have recently retained observer status for another year. IDA has set up a committee to review and revise its Constitution, in order to enable an organisation such as DAI or Autism International to become full members, without having to have national DAI organisations. Professor Peter Mittler represented us recently at their AGM in Athens, and worked hard to encourage the setting up of the 2018 committee to review their constitution to allow an organisation such as DAI to become a full member. He continues with us in a consulting role.

Website update
We are in the process of updating out website, to make it more accessible and enabling, and where we will also soon have online member and supporter discussion forums similar to Talking Point.

Brain health Hub
We have also recently set up a private Facebook group and weekly meeting, called The Brain Health Hub to support members wanting to manage dementia (either themselves, or with the support of their own doctor) with a lifestyle approach to dementia including the Bredesen Protocol.

DAI Printing
We are also thrilled to be able to announce that Graphic Print in Adelaide has agreed to provide all of our printing pro bono. It wuld be helpful to find a print company in each country, e.g. the USA, UK and Canada, to ensure shipping costs do not undo the benefits of this.

Financial reporting update
This year, we have had the services of Mr. Bill Kerr, from Hillstrom, Kerr and Company Incorporated to complete our monthly financial reports, and we will publish our second Annual Report in January 2018

Thanks to you all
We continue to welcome new members and are finding the growth of our support groups is a unique free global service actively supporting and empowering our members to live with a better quality of life. My sincere thanks to everyone for their continuing dedication to improving the lives of people with dementia and our families, and I look forward to working with the new board in 2018.

Finally, I close by reminding us of the Margaret Mead quote, which we have had on our website from day one of DAI’s existence:

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

We look forward to sharing our 4th birthday with your all in 2018!

Best wishes and thanks,
Kate Swaffer

Phyllis Fehr at the NCD Alliance Workshop: “Our Views Our Voices”

Dementia Alliance International (DAI) board member and ODAG Human Rights Advisor Mrs Phyllis Fehr represents DAI at the NCD Alliance Our Views, Our Voices workshop. This workshop has brought together people living with NCDs from across the world. The objectives are to:

  • Share the Our Views, Our Voices consultation results with participants
  • Contribute to finalising the Advocacy Agenda of People living with NCDs
  • Explore notions of community identity among people living with NCDs
  • Articulate the vision of the Advocacy Agenda
  • Discuss how to implement the Advocacy Agenda of People Living with NCDs

The workshop will result in the finalizing of the Advocacy Agenda of People Living with NCDs which will be launched at the Global NCD Alliance Forum. It will also serve to cultivate a group of people living with NCDs that will go on to champion the Our Views, Our Voices initiative.

Representing DAI, Phyllis was invited to present as part of the second workshop on Day one, on social justice. This is her speech:

Thank you for this invitation to speak today, representing Dementia Alliance International, whose members are formally diagnosed with dementia representing 44 countries.

It is also an honour to be here to represent the estimated 50 million people living in the world living with dementia, also listed as a Non Communicable Disease. We know there are a lot more people without a diagnosis, too often one they do not want, often because of stigma and social justice related issues. 

When I was 48 when I started noticing signs of dementia, but it took until I was 53 to get a formal diagnosis. Once I received this diagnosis I was told to go home, get my affairs in order and try to enjoy the time I have left.

I did this at first but it wasn’t good enough for me either. I still had my intelligence, I still had all my nursing knowledge, I felt I could use this to help others living with dementia and I initially did do this in Ontario Canada. I sit on the Ontario Dementia Advisory Group (ODAG), and am one of four co founders, as well as their human rights advisor. We are a group of people living with dementia advocating for policy change and social justice.

I also found Dementia Alliance International and joined them, and am now an active board member.

DAI was exactly what I was looking for. They are global, and they are the voice OF people with dementia. Kate Swaffer spoke at the WHO First Ministerial Conference on Dementia in March 2015, and placed human rights and disability rights onto the global stage. Many people with dementia are now actively working individually and collectively towards claiming them!

I have attended meetings in Geneva twice this year, once to speak at the opening of the 17th session on the Charter of Rights for People with Disabilities (CRPD) representing DAI. The next time as part of the civil delegation when Canada presented on their human rights issues for people with dementia. In their report back to Canada dementia was mentioned, which I believe was the first time that this is ever happened. This has given me further drive to stand up for people’s rights from a human right’s perspective.

We know the people with dementia are stigmatized in many different ways so they hide away to avoid that stigma. If we look back to the 60s people were with dementia were told to go home and that is what they did.

Let’s jump ahead to round the year 2000 when my mother was diagnosed with dementia; she too was advised to go home get your affairs in order. My mother hid her diagnosis for many years but at this time they were still very little they could do for people with dementia. In the end my mother ended up in a nursing home because of her diagnosis she was most times left in a chair and wasn’t included in anything.

But it is still happening today!

I too was given the same advice but because of my intelligence and my nursing background I refused to take it. Kate Swaffer has termed this Prescribed Disengagement®; it happened to her, and it is still happening to people being diagnosed today.

I’m going to stand up and fight this because there’s has to be a better way. When we consider the continuing breach of human rights for people with dementia, there is no other choice. For example, in Canada one of the provinces has decided and is taking it to the supreme justice in the province, to have it made into law that people with dementia cannot make decisions on their own due to their disease. This is wrong, as it contravenes our human rights; people with dementia do not instantly lose capacity to make decisions for themselves at the time of diagnosis. It is a violation of the human rights and the CRPD. So we are fighting this in Canada and will have to wait to see what happens because if they do make it a law then we will be going to court and fighting this as a human rights violation.

In the early stages of dementia we are able to do things, but we need support for the disabilities caused by the symptoms of dementia to find different ways to support us to live with dementia, not only to die from it.

We need supports that currently are not offered. Things are finally starting to change for people with dementia around the world you may ask why this is happening. This is happening because of people like the late Dr Richard Taylor and DAI’s Chair Kate Swaffer and many other persons living with dementia standing up to the social norms and challenging them. I hope by being here today I have been able to instill a little bit of knowledge on you about what people with dementia are going through. If you have any questions I am more than willing to answer them, if we have no time then please come up to me during one of our breaks I am open to talking to anybody about this disease process.

In closing I want to give you an analogy received from Brenda Avadian of The Caregiver’s Voice. She said as one [Phyllis Fehr] who lives with a non-communicable disease –dementia –

We’re doing all we can to raise awareness worldwide and make dementia “communicable” by finding strength in working together and sharing our stories for advocacy.

This struck a chord with me. People are still not made aware of it and I fully believe that the more it is spoken about, and the more we fight for our human rights, the better off people living with dementia will be. Thank you.

DAI’s Chair & CEO Kate Swaffer will be following up this as she has been invited to attend the Global NCD Alliance Forum on 9-11th December in Sharjah UAE, “Stepping up the pace on NCDs; making 2018 count.” where the Advocacy Agenda of People living with NCDs will be launched and where the NCD Alliance will be mobilising NCD civil society community and bringing together approximately 300 people to discuss  I am looking forward to seeing you in Sharjah, UAE.

Of, By, and For People with Dementia

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