Category Archives: CRPD

Rehabilitation and dementia: evidence & opportunities

Our November “A Meeting Of The Minds” Webinar is by Associate Professor LeeFay Low fom Sydney University. The topic, Rehabilitation and dementia: evidence & opportunities, will be of great interest to members and professionals, and we hope you will join us.

 

 

 

 

 

About the Webinar:  The World Health Organisation has defined rehabilitation as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments”. Research and practice relating to dementia is predominantly focused on prevention, disease-modifying treatment, and care. This presentation will review the current evidence for rehabilitation strategies (e.g. exercise, cognitive training, occupational therapy) in dementia, and outline several ongoing studies. Barriers to rehabilitation for dementia will also be presented.

Register here…

About A/Professor Low: Lee-Fay Low (BSc Psych (Hons), PhD) is Associate Professor in Ageing and Health, NHMRC Boosting Dementia Research Leadership Development Fellow, and Head of Behavioural and Social Sciences in Health in the Faculty of Health Sciences, University of Sydney. She is a registered psychologist with a PhD in psychiatric epidemiology.

A/Prof Low conducts research that she hopes will make a difference in the world.

Her main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people. She has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice.

She has authored over 100 peer-reviewed articles, as well as two books on dementia. She is an active advocate in improving how older people are treated and cared for. Lee-Fay thinks that research is great fun, and even admits to liking statistics.

Register here…

Wednesday, November 28, 2018 – times (USA/UK/EU/CA):

10:00 am  Honolulu
12:00 pm  Oregon Portland/San Francisco USA
12:00 pm  Vancouver CA
2:00 pm    Des Moines/Chicago USA
3:00 pm    New York USA
3:00 pm    Toronto CA
8:00 pm    London/Glasgow UK
9:00 pm    Paris, Munich, Amsterdam, EU

Thursday, November 29, 2018 – times (AU/NZ/JP/IND/TWN):

6:00 am    Adelaide AU
6:30 am    Brisbane AU
7:00 am    Sydney/Melbourne/Canberra/Tasmania AU
4:00 am    Perth AU/Taipei TWN
5:00 am    Tokyo, JP
9:00 am    Auckland, NZ

The webinar runs for 1 hour. 

Check your time if not listed above by using clicking this link… 

Register here…

 

COST TO ATTEND:

  • FREE for DAI members and their care partner (if you have dementia, please join here: www.joindai.org
  • $40 USD for all others
  • $20:00 USD Students (FT, unemployed)
  • DONATION (this is not in lieu of a paid ticket unless it is higher than the fee, if you do not fit into the FREE ticket category)

THE SMALL FEE PAID FOR SOME ATTENDEES OF THIS EVENT IS GREATLY APPRECIATED.

WEBINAR FEES AND DONATIONS ARE OUR ONLY SOURCE OF REGULAR REVENUE. WITHOUT THEM, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

PLEASE DONATE HERE: https://www.dementiaallianceinternational.org/donate/

If you need a certificate of attendance, please email us at [email protected]

Note: the Q&A  session at the end of our webinars are never available publicly, and therefore will not be available after the event. Some webinars are available on our YouTube channel, but not all depending on each presenter, or the quality of the recording.

Hello, my name is Peter Mittler

Image source: Peter Mittler

The #DAI #Hello #WAM2018 blog series have been very popular, hence we intend to continue them at least weekly for some time to come. We have many new members joining DAI each week now, and want to continue to give everyone with dementia a platform to have a voice, if they want one.

As is it important to talk about progress (or not), today, therefore we begin October with an article by DAI member Professor Peter Mittler. Peter says #Hello with a reflections on our human rights.

Peter has worked tirelessly for most of his professional life for the rights for people with disabilities, and for the last few years has devoted his attention to the rights of people with dementia, sharing his extensive expertise and knowledge, and is friendship and commitment to the 50 million people currently living with dementia. Thank you Peter. We are humbled and honoured to have Peter as a member, and thank him for his continued focus on the rights of us all; DAI is deeply indebted to you.

Hello, my name is Peter Mittler

MY REFLECTIONS ON OUR HUMAN RIGHTS

My human rights journey began shortly before my 7thbirthday when Hitler’s army marched into Austria and street thugs wearing brown shirts and swastikas arrested thousands of Jews, closed their shops and businesses and stopped me and other Jewish children going to school.

My story is told at length in a memoior, Think Global Act Local: A Personal Journey (2010). It now needs a new title:  Act Local Think Global because the responsibility for taking action on human rights rests with each and every one of us.

The United Nations Organisation was founded in the wake of the Holocaust and the loss of hundreds of million lives in World War 2.  Under the inspirational leadership of Eleonor Roosevelt, the UN produced the Universal Declaration of Human Rights in 1948 for everyone on the planet.  That Declaration provides firm foundations for the legally binding Conventions on the rights of specific groups who were experiencing inequalities and discrimination: women, children, ethnic minorities and last but not least disabled people.

Although the UN has officially recognised people living with dementia as persons with cognitive disabilities, governments have not included us in the implementation of the CRPD or other Conventions. This is nothing short of systemic discrimination which will only end if we insist and persist in the demand for our human rights on the same basis as people with other disabilities.

  • What can be more important than our human rights?
  • What is worse than decisions about us without us?
  • Why do governments and decision makers ignore us?

Since March 2015 when Kate Swaffer first demanded access to the CRPD at the World Health Organisation, I have worked with her and many others to secure our rights but we have very little to show for our efforts.

The UN supports us but our governments continue to ignore us. Dementia Alliance International and Alzheimer’s Disease International helped inform the World Health Organisation’s Global Action Plan for a Public Health Policy in Dementia (2017).  It is a good plan but it is not clearly based on the General Principles and substantive Articles of the CRPD. Furthermore, very few governments have acted on it.

There now needs to be a campaign to use the CRPD in planning supports and services in the wider context of the UN’s Action 2030 Sustainable Development Goals.

Will it happen?

Over to you!! 

Peter Mittler © 2018

 

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Peter. Become a DAI Sponsor or Associate today.


 

Hello, my name is Jerry Wylie

On the final Day of the #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature Jerry Wylie, DAI’s Vice Chair and an advocate from Philomath, Oregon, in the USA. Jerry is a committed and very active board member, and supports two of our peer to peer support groups, as well as co-hosting our Action Group and wekly Brain Health Meetings.

Thank you Jerry, from everyone, for saying hello again here to support this series, and for all that you do for DAI and others. Jerry has also set up a local face to face support group where he lives, which now has more than 20 members. We are very proud of him, and grateful for his hard work. This is his story.

It is a matter of our Civil Rights

DAI & Jerry Wylie © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Jerry. Become a DAI Sponsor or Associate today.

DAI in Chicago #3

Today, we bring you DAI’s Vice Chair Jerry Wylie’s recent Plenary speech from ADI Chicago. Sit down, grab a coffee and put on your seat belts. It is a fabulous, if not challenging ride, especially so for health care professionals and providers, so get yourself ready, relax, and tune in to watch it now here, or later on our YouTube Channel.

Living the U.S. National Dementia Plan

Presented by Jerry Wylie

This is not Jerry’s full speech notes, but a blog he wrote very recently, that goes well with it, and covers many of the key messages in his speech. He also presented his speech again at our monthly Webinar yesterday, so those who could not attend ij erson, could hear him live online.

“Living well with Dementia may well be, the best lived experience of my life now that I have recovered from being inhumanly treated”.

What? Inhumanely treated? How, when and why? Read on……

First, our diagnosis is delivered “Without Any Referrals” to support or disease education. No discussion of rehabilitation and No words of encouragement, No mention of hope, how diet & exercise could help. We are given absolutely nothing, zero, nada. To this day, we are still being told to get our affairs in order and, here are some drugs that might help with your symptoms, temporarily.

The end result; we are “delivered directly into suffering” from depression by the very doctors who are paid to keep us well.

Not long after this wonderful experience, most of us, are “abandoned by one or two members of our own family”.

Below, is a chart that shows exactly how  we process this situation. We no longer have the ability to properly process what happened and, because we need family more than ever, we are driven even deeper into “long term & unnecessary suffering”.

It took me 1.5 years of preventable, unnecessary suffering, to fight, scratch and claw my way out of the most miserable, vegetable like existence of my life.

“THIS IS NOT JUST MY STORY”!

It’s the story of 50 million other people living with Dementia as well. This treatment is our standard treatment world wide, perhaps, due solely to ignorance.

I can confidently say “The only time” a person with Dementia “really suffers” before end stage, is when we are either unintentionally or, intentionally mistreated. Period.

Clearly, this is cruel, unusual and unacceptable abuse. Clearly this is a violation of our human rights.

When someone is caught abusing a pet, it immediately becomes a huge media/news event and people get arrested. When 50 million people are abused by our doctors and sometimes by family members, nothing is reported and no one is as much as reprimanded.

When harsh words are spoken to us, we can’t process what you said but, we “cannot forget” how you made us feel. Once again, we are unintentionally or, intentionally pushed into“constant, ongoing grief” that we cannot shake off or even come close to processing. Unexplained, it is a life sentence of pain at a time when we desperately needed the opposite.

This is the truth. This is the debilitating, mentally abusive, harmful & “INHUMANE TREATMENT” that is currently happening about every 3 seconds somewhere to virtually defenseless people.

NO,  STOP & THINK about this! 50 million people today plus, “10 million more people” every year. This may well be the “Most Inhumane Tragedy of Our Century”!

Now, feel free ask me why I am such a boisterous advocate for people living with Dementia and our Human Rights.

I dare you to ask me why people with Dementia suffer.

“Living well with Dementia may well be, the best lived experience of my life now that I have recovered from being inhumanly treated”.

Jerry Wylie © 2018

Civil Society Forum – Day 2 update

In June I was representing DAI in New York attending day 2 of the pre conference Civil Society Forum , followed by the 11th Session of the Conference Of State Parties (COSP) on the Convention of the Rights of Persons with Disabilities (CRPD).

I apologise for a late report on it; and there are more to come! Clearly, there are not enough hours in each day, or days in each week!

The Overarching Theme this year of the 11th COSP was “Leaving no one behind through the full implementation of the CRPD”, with the following Subthemes and Crosscutting themes.

Sub-themes:

1. National fiscal space, public-private partnerships and international cooperation for strengthening the implementation of the CRPD
2. Women and girls with disabilities
3. Political participation and equal recognition before the law

Cross-cutting theme:

Promoting high-quality disability statistics and disaggregation of data by disability status for the full realization of the rights of persons with disabilities.

It was very pleasing to be given the opportunity to make various statements, the first one on Day 2 of the Civil Society Forum, the pre COSP event which I was only able to attend on the second day. It was an opportunity to ensure dementia was not forgotten as a condition causing acquired, and progressive cognitive disabilities.

My first statement, not pre-planned, but made in the discussion time after the main speakers in the aftrenoon of Day 2 of the Civil Society  Forum on June 11, 2018 is listed below.

Statement 1 – Day 2 of the Civil Society Forum in New York, preceding the COSP.

My name is Kate Swaffer, a co founder and the current Chair and CEO of Dementia Alliance International. I’d first like to thank Klaus Lachwitz from the International Disability Alliance for mentioning dementia in his earlier comment, which was the first time this condition has made it into the discussions today.

I represent the 50 million people currently living with dementia, and am also one of them. The WHO states there is a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is also the leading cause of death and disability in older persons.

Yet most people in civil society do not yet see this condition as one that brings with it acquired cognitive disabilities, and I ask that we consider this today, to ensure that no one is left behind.

Dementia disproportionality impacts women and girls; more women are diagnosed with dementia, and women and girls make up more than two thirds of unpaid carers, and more than 70% are women and girls in Low and Middle Income Countries.

People with dementia are systematically excluded from rights based and equitable inclusion; the barriers are far more than dementia.

The real barriers are due to stigma, discrimination and the misperceptions about the capacity of people with dementia, and the many breaches of our most basic of human rights.

Inclusion continues to be a ‘tick box’ experience for many of us, and very often, self-advocacy requires significant self-funding, simply to ensure our rights under Articles 4.3 and 33.3, of which discussions have been exclusively focused on today.

We therefore ask for not only inclusion, but for appropriate funding from governments and NGO’s or DPO’s to ensure full and equal inclusion and participation of this cohort, to enable it. As many have speakers have stated today, this is undoubtedly our right.

Thank you.

Kate Swaffer
Chair, CEO & Co-founder
Dementia Alliance International

‘Tackling Dementia – It’s Everybody’s Business’

DAI is proud to support Alzheimer’s New Zealand today by promoting their upcoming biannual conference.

Alzheimer’s New Zealand is a member of our strategic partner, Alzheimer’s Disease International.

Although DAI is regularly asked to promote conferences, if we did this for every dementia related conference in the world, our site would be transformed from one for people with dementia (our members), into a global confernce program, so instead, we limit this to ADI members only, as requested.

DAI also heavily promotes the attendance  of members and their care partners to attend ADI and ADI member conferences, and does quite lot of fundraising to support attendance. It is wondeful that Alzhemer’s New Zealand have found a sponsor the the second time so that registration for peoplewith dementia and thei care parter is free again.

Alzheimer’s Scotland managed to do this for their conference this year as well, an important step to ensuring equal and full inclusion of peoiple with dementia, most who are no longer working due to the disease, or the stigma and discrimiantion dementia brings with it.

We ask that you please consider attending this very important conference, which is only held every two years.

‘Tackling Dementia – It’s Everybody’s Business’ is the premier conference focused on dementia in New Zealand.

The Conference is an opportunity to engage in a multi-sector conversation on how services for people with dementia can be transformed to reflect a world of more choice, flexibility and quick access to support; and to harness the best insights and knowledge from a range of sectors that can all help New Zealand meet the dementia challenge.

Abstracts are up to 250 words in length and if accepted, will be followed up with an oral presentation at this exciting conference.

Submissions close on Friday 22nd June 2018, and acceptance/non-acceptance will be advised by Monday 9th July 2018.

Abstract themes

We invite abstracts reflecting the programme themes:

  • Peer services – people living with dementia supporting themselves and each other
    Includes services delivered by and for people living with dementia

  • Citizenship and rights for people with dementia
    Includes dementia friendly programmes, services and standards, the review of the Convention on the Rights of Persons with Disabilities, and supported decision making

  • Effectiveness – the evidence for the right things to do
    Includes therapeutic interventions, the role of service navigation, the lived experience of dementia, biomedical developments and delivery models

  • Innovations – from the margins to the centre: New ideas and thinking
    Includes anything and everything that has the potential to transform the way we experience dementia

One of our blogs from 2015 provides guidelines on attending conferences, especially on how to write and submit an abstract, which you can read here...

If you need any assistance, please do not hesitate to contact us by email.

Mary-Beth Wighton speaks…

As promised yesterday, todays blog is of Mary-Beth ((MB) Wightons brilliant speech at the Canadian National Dementia Conference in May. Thanks to MB for advocating for us all. We are all very proud of you, and your amazing partner Dawn, and everything you are all doing in Canada.  Congratulations again for your selection onto the Ministerial DementiaAdvisory Group. You can read Mary-Beths full speech below.

Journey through the continuum of care and the healthcare system from the perspective of a person living with dementia.

I never would have imagined that at the young age of 45 I would be diagnosed with dementia.

Unbeknownst to me, my dementia journey started 4 years earlier with an initial appointment with my family doctor for memory problems and other symptoms.

My GP did an excellent job of referring me to specialists who could possibly provide insight. After a plethora of tests, doctors, and diagnosis’s including Conversion Disorder and PTSD, it would be a gerontologist who would provide the life-altering diagnosis of probable frontotemporal dementia.

The Assessment Process within my care pathway was riddled with anxiety, confusion, long-wait times, and an overwhelming lack of understanding of the next steps of care.

The diagnostic disclosure was abrupt, insensitive and simply lacked compassion.  Like hundreds of thousands of other Canadians with dementia, I was told to go home and get my affairs in order.

After weeks of waiting, we would then move into my postdiagnosis support.  The local Alzheimer Society and Community Care would sit down with my partner, Dawn, and me. We were introduced to a definition called Early-Onset.  Other than that, little support was provided in terms of appropriate education and resources.

Unlike most people living with dementia, young-onset has its own additional challenges that our healthcare system is struggling to address.  At the age of 45, my financial support to my family drastically was reduced.  Dawn, who was 39, was told she would be my primary care giver with the expectation that our daughter, who was just 17, would also be expected to contribute in care.  Dawn is expected to do this without pay and at the cost of her own career and life choices.

And through most consultations and meetings, the focus has been on my inabilities, and the stress and heartache that I will bring to my family and friends.

Stigma is drippingfrom the Canadian healthcare system and it is combined with a lack of appropriate education for all parties.

I’m worried what the next stages of my continuum of care will bring.  The fragmented care pathways and healthcare systems I experience, cannot exist.

Thank you.

 

Canadian members hard at work…

It has been a few weeks since the Canadian National Dementia Conference held in Ottawa May 14 & 15th 2018, and although belated, we are posting the excellent speeches given by two of the co-founders of the Ontario Dementia Advisory Group (ODAG).

We are very proud they are also DAI members; Phyllis Fehr is a DAI Board member, and Mary-Beth Wighton who is the current Chair of ODAG,  and along with Jimm Mann, is a full member of the Canadian Ministerial Dementia Advisory Group.

Today, we are publishing Phyllis’s speech, and tomorrow, Mary-Beths. To say the people living with dementia in Canada are ahrd at work is an understatement, and we congratulate and applaud them all as they work together to ensure the Canadian Dementia Strategy is fully embedded with human rights. Yes, their human rights.

Phyllis Fehr’s Inspirational keynote speech:

Good morning everyone.  How are you this morning?  Are you all excited to be here?  Are you ready to join me in getting down to work? 

First a few THANK YOU’s are in order.

Thank you, Public Health Agency of Canada for taking on the Daunting task of planning the first-ever Canadian dementia strategy conference.  You have remained dedicated and worked hard to make this conference a reality.  I thank you for inviting us to participate.

It is a great honour for me to be here, today.When I say this, I think of the Number of people invited to be in this room -around 150 invited guests. You could have chosen any one of the  

36,290,000-people living in Canada. Yet, here WE are. 

For people living with Alzheimer’s and dementia this is very important because there are 564 thousand people living in Canada with a form of dementia  and there are about 25 of us in this room. 

I see some familiar faces in this group, those of you I have not met yet, I am hoping to get a chance to meet you over the next couple of days.

To begin, I’ll tell you a bit about myself.

My name is Phyllis Fehr. I worked as an ICU RN until I developed younger-onset dementia. At the age of 48, I started to see some typical early signs, such as misplacing things and forgetting appointments. It wasn’t till I was 53 that I received a firm diagnosis, after going through a two-day battery of testing. 

I will never forget that day or maybe I will, but I feel like it has been branded in my head. You see on that day we were escorted into the gerontologist’s office.

Once she entered the office, I felt like I no longer existed.

She looked at my husband and spoke to my husband. As far as she was concerned, I was not there. She told him that I had “early”-onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself. 

I couldn’t say a word! I was in shock. First, I’d been given a diagnosis of a terminal disease. Yes, I was a health professional and aware. Yes, I was ready to hear the diagnosis.

But she treated me with disrespect. She ignored me. One day, I’m functioning and the next moment, I am diagnosed with Alzheimer’s and have immediately lost all capacity? That experience really bothered me. So, I requested my neurologist to refer me to someone else.

For nine months, while I waited, I became with drawn. I did not want to be involved. That first gerontologist left a disabling impression upon my being. I lost all confidence in knowing anything. She actually broke my will to continue on.

The referral took a while, but it was worth my wait. This new doctor, spoke to ME. 

She seemed to understand what I was going through. She supported me and encouraged me. This made a world of difference to how I thought about dementia. She gave me back my person hood, she gave me back my will to go on, she turned me into the person you see today, the person who goes out and advocates for dementia, advocates for change. 

I have regained my voice, I have regained my confidence.

I am involved again, not just in advocacy and public speaking, I’m involved in research, I am a test subject and I am a researcher. It may be hard for me but I can still do it. I sit on a group called the voices group, we help research from our lived experiences and we are respected.

Today, I realize I still have my intelligence. I just need to access it, differently. I still have all my educational experience. I am still ME.

In truth, my dementia journey began much earlier than age 48. It began when I was 13.

My grandmother came to live with us because she had Alzheimer’s. Years later, my mother was diagnosed with dementia. What a different world we live in today, compared to in the 60s and 90s.

I will end my journey with a story. In our family we are very open and honest about dementia we don’t hide. We educate ourselves about it including the little ones. Not like when my mom and grandmother had it and it was hidden. My four year old grandson has developed stuttering and he attends speech and language classes.  

A couple of weeks ago while there they were doing the education around stuttering and the pathologist took down the mannequin and open it up, so he could see the brain, lungs etc and she explains how it is the signal from the brain that makes you talk and how his signal is getting mixed up.  My grandson looks at the mannequin; deep in thought, when he looks up he looks across the room at his mom and yells “mom I know what’s wrong with nanny, her signals get mixed up just like mine. Out of the mouth of a 4 year child. 

Over the next two days we are going to hear and have a chance to give our input on a number of different topics relating to Alzheimer’s and dementia. 

Things are changing. More people are growing aware, of what it means to live with dementia. Today, we’re working together to make Canada a better place for people living with dementia – to live and not hide.

For those of us who are here representing people with lived experience, we feel an urgency to do this work. This is because we are all aware that this disease is terminal, we know the different stages that we will go through. What we don’t know is when, or how long we have before the decline starts. That is why we feel that this is such an urgent matter.

We are also well aware that there are many others in Canada who will continue this work where we leave off. I am living with what I call the roller coaster of dementia. I have high times when I function well, i have low time when it is hard to function or think, i even have moments when I  are totally derailed.

But I dust myself off and get back on that track maybe a little worse than when we derailed but i keep going. We just don’t know when the day will come that we won’t be able to get back on the track. This is why we all work so hard to make these changes so that in the future other may have a smoother ride. The other side to this is that we have to take into consideration is age and other co-morbidities. We are learning that this is not just a disease of the old.

I don’t know about you, but when I looked at the program for the conference and knew I could choose only one topic in each of the three dialogue sessions, it was hard deciding.

There’s so much work that needs to be done so much work that people with dementia need to have input into. I think this is just the start.

I would also like to Thank you, Laura, Mary Beth, Tammy and Lisa for presenting the preconference workshops.The information you shared will make this conference easier to navigate and help educate us on each dialogue session so that we can better choose which sessions best fit our individual needs.     

The people in this room today represent the 10 provinces and 3 territories in Canada. We have worked to help bring about change for those living with dementia, whether it is in our community, province, or country. The next two days of work will empower us with stronger voices and will give us more solid ground to stand upon. 

What we learn here, will help us implement the changes necessary for people living with dementia in Canada. 

Are you ready to join me… to roll up your sleeves, and get to work? 

Together, we can make the changes for people with dementia to live well with this disease.

Together we will build a world-class national dementia strategy for Canada!

I could go into some of the topics that we will be discussing but I leave that to the other experts that have joined us here, today and tomorrow

In closing I leave you with a quote from Anne Lamott. She once said “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.”  So, I feel that we have waited, watched and worked, and today the dawn begins for dementia in Canada.

Let’s work together. 

Day 5 of the 71st World Health Assembly

Photo source: Kate Swaffer

To say it has been a busy and at times overwhelming or exciting week, is quite the understatement. Even DAI’s Back Up Brain (also my husband Peter Watt, and my B.U.B. as well) has been attending sessions on our behalf, as some I felt were of interest or benefit to DAI and our members were on at the same time I was at something else.

Peter is not a ‘conference groupie’ by nature and even dislikes the idea of institutionalised education, so taking notes, and attending some of these events, was probably not on his #BucketList (!!!), and I have no doubt he may have found many of them mildly boring and certainly very tedious for him… But he did it, for the rest of humanity!!!  😉

The image above is from one of the signs walking into the Palais de Nations (United Nations), all focused on human rights. I think this one applies well to DAI, as we are one, especially when we work together as a TEAM. When we do that, our impact is much stronger, and our 2018 Board and Action group members this year are an incredible team.

I’m TRULY proud and honoured to walk beside them all, and work for, and stand beside all of our members.

But back to the 71st WHA….

In truth, some of the sessions I attended were not only a tad boring, they were repetitious, and often had the same speakers from a previous session, sometimes even giving exactly the same speeches.

For now what I am adding for Day 5 of the WHA, is one great quote, as it is very relevant to what we do at Dementia Alliance International, plus the exact speech from yesterday, and a video of interest.

After the session late yesterday, Human Rights in Global Health: Rights-Based Governance for a Gobalizing World, I wanted to share this quote from one of the presenters, lawyer Ms Alica Ely Yamin, who is the Program Director, Health and Human Rights Initiative, from the O’Neill Institute for National and Global Health Law, made during the Q&A ater the speakers:

“It is the people who are affected by an illness or condition who MUST TAKE THE POWER, not the Bureaucrats.”

This is exactly what members of DAI have done, and the world is still getting used to it.

Hence, we will persist, we will continue to co-operate and collaborate and work together, and we will continue on until we make the change we not only want, but that we all have an absolute basic human right to.

It would take too long to write up the notes for all the sessions we attended Peter and I have attended between us, so I’ve simply added the exact speech I made yesterday, reduced to less than one minute as requested by the Chair, on Palliative care for all, including people with dementia. As mentioned in yesterdays blog, I was technically representing The World Palliative Care Alliance. This is what I said:

None of us in this room want to suffer* ourselves or see our friends and family suffer because of a lack of palliative care for ​conditions such as cancer, dementia, COPD and heart disease when cure is not possible. Palliative care is a fundamental part of Universal Health Coverage and the continuum of care for people living with non-communicable diseases. Take if from someone living with dementia, let’s make the cost effective essential package of palliative care available to those who need it.

*The use of the word suffer used in this speech, is not referring to the lied experince of dementia, but rather, to the suffering caused by the lack of access to palliative care.

I think many of you may also enjoy this video on my personal blog, based on  a presentation I gave in Brisbane on May 10, 2018, also very relevant to the World Health Assembly this week!

Kate Swaffer, DAI Chair, CEO & Co-founder

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!