‘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. 

The definition of the word dementia

On the 5th day of publishing a blog in support of Scotland’s Dementia Awareness Week, we are covering the topic of the literal definition of the word dementia, rather than discussing dementia from a medical perspective.

Following on from their theme of a better word for people with dementia and their families, by making sure nobody faces dementia alone, we hope this topic provides an opportunity to also rethink language, as this impacts the experiences of people with dementia and their families and friends.

A person with dementia in many countries is still seen as someone who has been taken over by Evil Spirits, and educating communities this is not the case is a long and slow process. The word, in English is derived from Latin, meaning madness (see above). It is no wonder four areas in the world have removed the word from their language.

Many say it is not the word dementia that is the real problem, but those people who treat us as if we are ‘mad’ or ‘not all there’. In saying this, it is important to be reminded this viewpoint is usually coming from the perspective of people with dementia who are predominantly white Anglo Saxons from developed countries.

People from non developed countries are more often likely to take the literal meaning more seriously than we do, and find the synonyms such as mental illness, madness, insanity, lunacy and derangement highly offensive, also possibly why the word dementia has already been deleted from four languages.

Kate Swaffer wrote about the word dementia a few years ago, and likened how it felt when first diagnosed to the Dementors in Harry Potter, sucking out her soul.  Whilst she held onto that fear, and believed the narrative of others that she was becoming an empty shell, it was certainly very difficult and took some time to see past that fear, and feel and live more positively with the diagnosis.

Many people with dementia now find their way past that period of darkness more quickly, especially through joining the DAI peer to peer support groups or with our one to one mentoring.

Thinking about the definition of the word dementia, interestingly, also relates to the initiatives known as Dementia Friendly Communities and Dementia Friends.

Based on the fact that four countries or regions have deleted the word dementia from their language, and replaced it with what they believe to be more respectful and sensitive terms, it is probably time we also reviewed the terms Dementia Friendly Communities and Dementia Friends as well. You can read our Chair, Kate Swaffers thoughts on this in her blog titled Inclusive Communities. It is surely food for thought.

Dementia Alliance International © 2018

 

 

DAI’s May Webinar: The Kiama DFC Project update

Today, for the fourth day supporting Scotland’s Dementia Awareness Week, we are publishing the recording of our May Webinar. This was an update on the progress of the Kiama Dementia Friendly Communities initiative, including its successes and challenges, and fits Scotlands theme of a better word for people with dementia and their families, by make sure nobody faces dementia alone.

Thanks again to our three presenters for giving up their time and expertise to support the global dementia community, and out DAI members and their families.

The Kiama Dementia-friendly Project has been at the forefront of placing people living with dementia at centre stage in the ‘dementia-friendly communities’ movement. The project’s Advisory Group (made up exclusively of people living with dementia and/or their care partners) from the start identified the priority issues that needed to be tackled and the way they should be tackled. A partnership project between the University of Wollongong, Kiama Council and Dementia Australia, the project has used participatory action research to measure its impact. 

To date, this initiative is the only one to have been recognised by the World Health Organisation (WHO).

“Challenges & successes in improving the dementia-friendly features of a small community and their replicability to other communities.”

Presented by:

Dr Lyn Phillipson: NHMRC-ARC Dementia Fellow, School of Health and Society | Faculty of Social Sciences and Australian Health Services Research Institute, University of Wollongong NSW 2522 Australia.

Dennis Frost: Chair Southern Dementia Advisory Group, Member Dementia Australia Dementia Friendly Communities Advisory Group & Dementia Advisory Committee

Nick Guggisberg: Manager Community & Cultural Development, Kiama Municipal Council.

 

 

 

 

DAI June Webinar: The STRiDE Project

Our third blog to support our members, and Dementia Awareness Week Scotland is a follow up to yesterdays blog, about the STRiDE Project. This webinar is an update of the progress the STRiDE research team have made since the kick off Workshops and meetings that Eileen reported on yesterday, highlighting just how far they have come, and perhaps even some of the  challenges to be faced ahead.

“A Meeting Of The Minds” Webinar, June 27/28, 2018

  • Wednesday, June 27, 2018 (USA/CA/UK/EU)
  • Thursday, June 28, 2018 (AU/NZ/JP/SGP/TWN)

Please note: this is one event, set in a number of different time zones.

Register here…

 

About Adelina: Adelina is an Assistant Professorial Research Fellow at the Personal Social Services Research Unit at the London School of Economics and Political Science. Her main research interests are economic aspects of care, treatment and support of people with dementia, and long-term care financing.

Adelina is the co-lead of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, a multi-national research project funded by the Research Councils UK’s Global Challenges Research Fund involving Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa.

She also works on the “Modelling Dementia” (MODEM) project which aims to estimate the impact, in terms of costs and quality of life, of making interventions that are known to work for people with dementia and their care partners more widely available.

Adelina is a member of the World Health Organisation (WHO) Guideline Development Group for Risk reduction guidelines for cognitive decline and dementia and a consultant for WHO’s Department of Ageing and Life Course.

She was also a co-author of the World Alzheimer Report 2016.

Adelaine says: I first learnt about dementia through my grandfather, he moved in with my parents when he needed more support, but loved going back to his own seaside home whenever I could take a holiday.

About the Webinar:  Approximately 50 million people globally are estimated to live with dementia, and about two-thirds live in low-and-middle income countries (LMIC).

Everywhere, dementia is a major cause of disability among older people and can have a huge impact on their quality of life, particularly if adequate treatment, care and support is not available.

Provision of care and support for people living with dementia can be socially and economically very costly. These costs are mostly borne by family members, particularly women and girls. However, in the face of demographic, societal and economic changes, there are indications that nations can no longer rely only on this informal family care for people with dementia. LMICs need to develop evidence-informed responses to dementia prevention, treatment and care.

The STRiDE (Strengthening Responses to Dementia in Developing Countries) project aims to build capacity in dementia research, in order to support the development of national policies for dementia.

The project brings together researchers and Alzheimer’s Associations from seven LMIC countries: Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa, and from the UK. The project is a partnership with Alzheimer’s Disease International and Dementia Alliance International, who are supporting the involvement of people with dementia in the project.

Please note: this webinar may not be made publicly available after the event; the Q & A sessions are never made publicly available to view.

Wednesday, June 27,  2018 – times (USA/UK/EU/CA):

  • 2:30 pm San Francisco USA
  • 4:30 pm Des Moines/Chicago USA
  • 5:30 pm New York USA
  • 11:30 am Honolulu
  • 5:30 pm Toronto CA
  • 2:30 pm Vancouver CA
  • 10:30 pm London/Glasgow UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

We apologise again for the late time in the EU, UK and Scotland, due to the season and dalylight savings.

Thursday, June 28,  2018 – times (AU/NZ/JP/IND/TWN):

  • 7:00 am Adelaide
  • 7:30 am Brisbane/Sydney/Melbourne/Canberra/Tasmania
  • 5:30 am Perth/Taipei
  • 9:30 am Auckland, NZ

The webinar runs for up to 1.5 hours. 

Check your time using this link… 

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)
  • $50 The cost of this ticket will be used exclusively to support people with dementia to attend ADI CHICAGO 2018
  • DONATION (this is not in lieu of a paid ticket, if you do not fit into the FREE ticket category)

THE SMALL FEE PAID FOR SOME ATTENDEES OF THIS EVENT, OR THE CONTRIUTION TO SUPPORT DAI MEMBERS AND THEIR CARE PARTNERS TO ATTEND CHICAGO, IS GREATLY APPRECIATED.

Register here…

 

DONATIONS ARE OUR OTHER ONLY SOURCE OF REVENUE.

WITHOUT THEM, DAI COULD NOT PROVIDE THE FREE SERVICES IT PROVIDES 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… 

If you need a certificate of attendance, 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.

Report on the STRiDE Project

This week is Dementia Awareness Week in Scotland, and they started the week by saying:  Scotland’s Dementia Awareness Week is Monday 4 June to Sunday 10 June 2018. We’re calling on the nation to help make sure nobody faces dementia alone.

In the spirit of supporting another country’s Dementia Awareness week, as we did with the UK’s Dementia Action Week two weeks ago, DAI is publishing another series of five blogs this week to keep the focus on dementia strong, and also global.

Along the lines of the goal in Scotland to ensure no one faces dementia alone, in our blog today we update you on a project DAI is involved in which is supporting dementia in Low and Middle Income Countries, with a report on the STRiDE Project in London, UK, March 8 – 11, 2018, written by Eileen Taylor. Thanks to Eileen and her husband Dubghlas for making the effort to attend the session in London to get the STRIiDE project started, and for the following report.

Report on the STRiDE Project in London

After thirty-three hours of travelling (including delays) after leaving Brisbane, we arrived London on Tuesday evening. The taxi took us to our hotel which was very nice and were met by a STRiDErepresentative, Anji who made us most welcome.

On Wednesday evening we met with all the STRiDEProject participants for a Meet and Greet. And, the Program began in earnest on the Thursday. Professor Martin Knapp welcomed everyone followed by an overview of the project.

A representative from each of the STRiDEcountries (Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa) presented an overview of what was happening dementia wise in their country. It made us aware how fortunate we really are in the West and how challenging it must be for many people living with dementia.

After morning tea, Dubhg and I made our presentation (20 Minutes) for Dementia Alliance International (DAI). Our focus was on the work that the DAI so capably does around the world. Highlighting our work in Human Rights and our On-Line Support Service. Major plug was made for DAI-Webinars and completed with a short overview of my story of living with dementia. After my presentation I was warmly thanked and greeted by Paola Barbarino, Michael Lefevre and Wendy Weinder from Alzheimer’s Disease International (ADI).

In the afternoonSTRiDE gave an overview of their approach they intended to take to bring about change in the developing countries. These items were like goals and described as Work Package Plans (WP 1 – 10).  That evening the group met again for dinner at the LSEbuilding. By this time, we were beginning to develop several relationships from the various countries represented. On this day we all mostly listened, but were told things would be different on the following days.

On Friday we all concentrated on the STRiDEoverall, Theory of Change led by Erica Breuer from the University of Cape Town, South Africa. Lots of small group discussions, questions, reflections, and sticky notes filled the walls leaving us wondering how it would all come together. The group met for dinner on the Friday.

On the Saturday, in the morning, Erica began to tie together all the items discussed on the Thursday regarding the Theory of Change. In summary, the Theory of Change is a complex aim to help groups inform contextually about their Research, the Tools they use to bring about change, the Training required, any Contextual Barriers and Facilitating Factors for Influence, as well as Indicators to measure Success.

Later in the afternoon we were led by Margie Schneider University of Cape Town and Anji Mehta from LSE linking the Theory of Change into Work Package Planes WP9 and 10. In the evening all the leaders from the Alzheimer’s Associations form the different countries including us from DAIwere invited by the ADIto meet at their office, for drinks and a social get-together. Later, the entire group met together for dinner.

On Sunday morning Dubhg and I had an hour to make another presentation, this time in the form of a workshop of what it is like to live with Dementia in a Virtual experience, entitled: “People with dementia influencing dementia care are research”. We ended the group experience with a video featuring Kate Swaffer relating to her experience. The overall response was positive with several Participants (including doctors) commenting on how it had changed their understanding and views of what it might be like for someone to live with dementia.

The remainder of the day was taken up with ensuring all the countries understood what would be required of them including ethics and management processes as well as the need for them to plan their own Theory of Change Workshop in the respective countries.

The STRiDEleaders then answered questions and fielded discussion about reporting structures, the group was divided up into two main groups –  The Researchers in one group, and Representatives from Alzheimer’s Associations by country, theADIand the DAIin the other group. Management and reporting structures were discussed with reference to Contracts (including one between STRiDEand DAI).

The two groups then met again and was followed by some fine tuning. The STRiDEGroup Project closed as 4.00 pm.

Spending four intense days in a closed room with thirty odd people and eating and working together allowed us to bond with these folk and form close relationships. We are thankful for the privilege and honour of being able to represent the DAI.

I would very much like the opportunity to continue working with the STRiDEProject into the future as I believe the continuity and experience gained will help to enhance their objects.

DAI Board member and Secretary, Mrs. Eileen Taylor

DAI supports self-advocacy in Singapore

One of the things DAI has been doing globally for some time now, is supporting countries where traditionally, people with dementia rarely, if ever,  speak out publicly about their disease. This was the case when DAI’s CEO and Chair Kate Swaffer spent a few days working in Singapore last year, actively supporting the Alzheimer’s Disease Association there, also a member of our strategic partner, Alzheimer’s Disease International.

As a ‘patient’ global advocacy and online support organisation, DAI works hard to help other advocacy organisations to bring dementia out of the shadows, and to support countries to empower self advocates to work with. Working together, we can and will change this world, and ensure a better life for all people with dementia, and their families.

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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 4 World Health Assembly #WHA71

This blog outlines the presentation being given in Committee Room A at th Palais de Nations on Day 4 of the Seventy First World Health Assembly in Geneva. Many members waited and watched patiently to watch it yesterday, which tehnically is a statement to support the Worldwide Hospice Palliative Care Alliance, but as the agenda is very ‘fluid’ here, a bit like Parliamentary sittings, it was moved to today.

DAI is working with this organisation, to ensure Palliative Care is provided for all people ith dementia, even though currently, globally, only 10% of ALL people requiring palliative care receive it. I am a member of their direct stakeholder committee, working on a project around strengthening the voice of direct stakeholders. It is wonderful peole with dementia are now being invited to be involved in working on so many different topics, all of which effect them directly.

When my father in law was dying in the later stages of Lewy Body Dementia, in a Long Term Care facility, he was denied palliative care, due to his age, but more specifically, due to having dementia. It was not only a breach of his human right to end of life care, it was devastating for those of us how loved him, watching on from the sidelines. It was once even taught, and believed that people with dementia did not feel pain!! So, presenting on Palliative care for all, is important.

My speech notes, prepared primarily by the Executive Director of
Worldwide Hospice Palliative Care Alliance, Stephen Connor, for the Session on the Non Communicable Diseases and High Level Meeting in New York is outlined below. However, we have just been advised we may not come up on the Agenda until late this evening, if at all!

Dear Chair:

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. Avoidable suffering of people with non-communicable diseases can be addressed through an extremely cost-effective package of palliative care as outlined in the Lancet Commission on Palliative Care and Pain Relief. This package costs as a little as $3 per capita in low and middle income countries. The UN General Assembly on Non-Communicable Diseases is an opportunity to revisit how well we have done in building access to these essential, and often neglected, services as outlined in the Global Action Plan and the monitoring and evaluation framework. In addition, we should look forward to ensuring an essential package of palliative care to reduce suffering, improve outcomes and increase health system efficiencies. Palliative care is a universal issue that affects all of us at some point. The availability of palliative care could be an indicator for the strength of a health system – which seeks not only to reduce the presence of disease but also in line with the principles of WHO’s constitution – to ensure physical, mental and social well-being – even when conditions cannot be cured. Take if from someone living with dementia, let’s make the cost effective essential package of palliative care available to those who need it.

Thank you,

Kate Swaffer

On Behalf of Worldwide Hospice Palliative Care Alliance

Footnote: *The use of the word suffer or suffering 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.