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

BILL GATES INVESTS IN DEMENTIA DISCOVERY FUND

VIDEO MESSAGE FROM BILL GATES AND MEDIA RELEASE FROM THE WORLD DEMENTIA COUNCIL:

Read the GatesNotes post here:  http://b-gat.es/2hZ4qXS and watch this accompanying video in which Mr Gates talks about the areas he believes need focus in order to alter the course of Alzheimer’s disease:

World Dementia Council welcomes boost for research on disease-modifying therapies

“Respected philanthropist Bill Gates has invested $50 million in the Dementia Discovery Fund (DDF). This is Mr Gates’ first investment in dementia research, and a personal one, sparked by experience of Alzheimer’s in his family, which, in turn, spurred him to spend time learning about the disease. Alzheimer’s is the most common of the diseases causing the symptoms of dementia.

Through this investment, Mr Gates recognizes that dementia is one of the most urgent health and economic challenges facing the world today. It has enormous human and financial impacts. Despite this, we currently lack drugs to prevent or cure the condition. With increasing prevalence rates globally, the need for effective disease-modifying therapies is pressing.

The G7 Dementia Summit in London in December 2013 set ambitions to identify a cure or disease-modifying therapy for dementia by 2025 and seek innovative ways to significantly increase investment in dementia research. The World Dementia Council, established after the Summit to lead global action towards the ambitions, endorsed the creation of an innovative public-private equity fund to accelerate progress to these ends.

Launched in 2015, the DDF invests in pioneering research and companies to speed up the discovery and development of disease-modifying therapies. It is the world’s first-ever dementia-focussed venture capital fund.

Dr Yves Joanette and Raj Long, respectively Chair and Vice-Chair of the World Dementia Council, welcomed the announcement. Dr Joanette said, “We are delighted that Bill Gates is joining the global race to defeat dementia and applaud his foresight. His very significant investment is timely as we are up against the worldwide clock to slow-down or halt the diseases that cause dementia. Bill Gates’ involvement is a major boost in enabling further and faster progress in breakthroughs on which effective new treatments will depend. Such treatments are a crucial component of the wider global agenda on prevention and cure, and improved care for people living with dementia.”

Webinar: Occupational therapy, and co-design of technology

 

 

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

Register here…

 

About Jacki: Jacki Liddle is a research fellow and occupational therapist researching quality of life, participation and life transitions. She is particularly interested in understanding and optimising the community lives of people living with neurological conditions, older people and family caregivers. She is currently involved in codeveloping technologies with consumers to support communication and to monitor the impact of health conditions during everyday life. She developed the CarFreeMe program to help people remain active and engaged in their communities after stopping driving.

About the Webinar: This presentation will cover two topics that relate to ways of supporting continued participation in those things that are important to you while living with dementia. The first is an introduction to occupational therapy. I will talk about occupational therapy’s (OT) role in supporting the participation of people living with dementia and their care partners in occupations that are important to them. I will also give an overview of the evidence for occupational therapy interventions. The second topic is a look at the co-design of technology and how consumers can and should be involved in designing technology. I will look particularly at our experiences with co-design in the Florence Project at the University of Queensland. The Florence Project is co-designing technology to support communication with people living with dementia and their communication partners. I aim to have time for questions and discussion as I would love to hear people’s thoughts about these areas.

Wednesday, November 22, 2017 – times (USA/UK/EU/CA):

  • 12:30 pm San Francisco USA
  • 2:30 pm Des Miones/Chicago USA
  • 3:30 pm New York USA
  • 10:30 am Honolulu
  • 3:30 pm Toronto CA
  • 12:30 Vancouver CA
  • 8:30 pm London/Glasgow UK
  • 9:30 pm Paris, Munich EU

Thursday, November 23, 2017 – times (AU/NZ/JP/IND/TWN):

  • 6:30 Brisbane
  • 7:00 am Adelaide
  • 7:30 am Sydney/Melbourne/Canberra
  • 4:40 am Perth/Taipei

The webinar runs for up to 1.5 hours.

Register here…

Check your time using this link: https://www.timeanddate.com/worldclock/fixedtime.html?msg=DAI+November+2017+Webinar%3A+%22Ways+to+participate%3A+Occupational+therapy%2C+and+co-design+of+technology%22&iso=20171123T0730&p1=240&ah=1&am=30

YOUR DONATIONS ARE APPRECIATED, AND ARE OUR ONLY SOUCE OF INCOME. WITHOUT THEM, DAI COULD NOT PROVIDE THE MANY FREE SERVICES FOR ITS MEMBERS.

PLEASE CONSIDER DONATING HERE: https://www.dementiaallianceinternational.org/donate/

Note: the Q&A session at the end of our webinars are never recorded, and therefore will not be available after the event. Some webinars are available on our YouTube channel, but not all as it depends on each presenter.

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.

Dementia: the impact on families

This week, we are publishing an article written by one of our USA members, Davida Sassler, who shares her experiences of Lewy Body Dementia and the imapct it has had on her own life and family. It is a courageous blog, and highlights the myths and stigma so many of us still experience when diangsed, especially from our own family and friends. Not only does the health care sector need better education, the community needs it too, and much more than awareness raising through the use of the discourse of tragedy and suffering, as that keeps too many of the myths alive.

People with dementia can, and are living positively with it. This is happening all aropund the world, and we are individually and collectively trying to get rid of the myths and fear of dementia. All we ask is that you see the person, not the dementia, and help us to live in spite of dementia by supporting us to maintain independent lives with disability and other support.

In fact, we simply ask our families and friends to open their hearts, and offer us the same love and support they would if we had been diagnosed with cancer instead of dementia.

Grandchildren and Dementia

By Davida Sassler © 2017

When I was diagnosed first with Alzheimer’s last December and later updated with Lewy Body Dementia diagnosis, I never imagined at 51 years old in the early stage that anyone would consider me a threat to my two grandchildren – Isaac 3 years old and Hannah 2 years old. Yes, I hallucinate and can be forgetful especially if not on my medication, but I never considered myself a threat.

Over the last year my son and his wife had separated due to her wishing to be with another man, it has been difficult on my son and grandchildren. Currently, my former daughter in law has decided that she wants sole custody of the children and has literally thrown me under the bus on her pursuit of taking the children away from their father. I along with my partially blind ex-husband are claimed to be dangerous and unfit to be around the grandchildren.

My son has spoken with his lawyer and our best recourse of action is to submit a letter from our doctors stating otherwise for the judge. I have spoken with my neurologist’s office and he has no problem supporting me. He feels that there is no reason for the children to be withheld from me.

This recent issue has made me consider growing up as a great grandchild, grandchild and as an adult a daughter of someone with Dementia. My great grandfather Ivo had Parkinson’s disease and later developed Dementia. As a child, I did not understand why my great grandfather would go from normal to completely confused or even angry at times which was not the man that I grew up around. He was never threatening to me or anyone else, he just seemed confused and frustrated.

Later as an adult, I had to deal with my grandmother Katheran who was Ivo’s daughter who had Alzheimer’s. She did her best to hide it from everyone. Most times, she didn’t speak just nod yes and smile. Eventually, she was misplacing everything and was wondering the neighborhood at 3 AM in the morning knocking on the neighbor’s doors. This convinced us that she was in serious trouble. At no time, did I ever prevent her from seeing my children. It took some explaining to them even in their teen years as to why she was acting so strangely.

Eventually, my father started having issues with confusion and hallucinations. At first his doctors claimed Alzheimer’s but he absolutely would not accept their diagnosis. He called them quacks and refused all medication. He knew his symptoms did not match what he was experiencing and blamed it on his dyslexia as he aged. As he continued, things only became worse. He was angry on a regular basis and soon forgot words. At moderate to late stage, my stepmom was able to finally get him on medication and to other doctors who diagnosed him with Lewy Body Dementia.

My father had always been a very strong man with an outspoken demeanor. It was difficult on my children to see him become childlike and unable to hold a simple conversation. At this point, both my kids were adults and my grandson Isaac had been born. Never did any of us consider keeping Isaac away from my dad because we knew on some level that he understood this was his great grandchild.

Dementia is a lonely place. I could see it in my family member’s faces and now I am experiencing it firsthand. I would never wish this on my worst enemy. People want to shun folks with dementia. I saw how they reacted when we would take my dad out to dinner at a restaurant. Everyone seemed uncomfortable around him and his simple ways. I guess it is easier to send someone away and out of sight than to acknowledge that they are suffering dementia.

Remembering how my family members were treated, made it difficult for me to admit to anyone outside of my family that I had Dementia. I did not want to be treated different. I still feel like me most days. The days that I am confused treating me differently only makes me angrier. I was literally fuming over the litigation papers trying to bar me from my grandchildren. No, I don’t know how long that I can remain in the early stage but I intend to fight to remain here as long as possible. During this time, I want my life to be as normal as I can be. I want to be around other people, friends, and family but do not want to be treated as a child or like I am made of glass.

A 100 years ago, crazy people were left in attics or sent to asylums to be hidden away because everyone was so ashamed to be around them. Now they openly shop at Walmart and pose as Walmartians. I even recently saw a video taken of a young woman with two different shoes (a flat and a high heel) dragging a raw roasting chicken along on a leash to the bus. Crazy is now celebrated and paraded about fully in society.

Unfortunately, society does not have the same tolerance for Dementia patients. If you are early stage, most folks don’t believe that you are sick and if you are far enough along to doubt the dementia, they prefer that you aren’t around them. They are no better than public lepers. All we can do is fight to dispel the myths of dementia. Educate the ones who refuse to see this as a disease like any other including Cancer. We are no different just a different type of disease except unlike Cancer, we have no current hope of a cure. It is a disease that was considered only for the old and infirmed not people like me who are still relatively young at 51 years old.

We must speak out and we must fight for our rights as long as we can.

Thank you Davida for sharing your story.

DAI attends mhGAP Forum 2017

Last week as Chair and CEO of DAI, Kate Swaffer was invited to attend the mhGAP Forum (mh = mental health) in Geneva. This involved some pre meetings and planning, and then two full days at the WHO attending plenary sessions, and attending topical side sessions.

Although we felt there was a priority to attend the Quality Rights side session, as DAI has been involved in that work, Kate was invited to present at the side session discussing the Global Action Plan on Dementia: A Public Health Response. The following is her speech:

Implementing the Global Dementia Action Plan into policy

“Thank you for this invitation to speak today, representing members of Dementia Alliance International, all people formally diagnosed with dementia now representing members from 44 countries. Thank you also to Drs Saxena and Dua and their team at the WHO for their work on the mhGAP App launched earlier today, and for the Global action Plan on A Public Health Response to Dementia, adopted earlier this year at the World Health Assembly.

I’d like to commence by saying the symptoms of dementia must be seen and supported the same way as people with any acquired cognitive disAbilities, and that by doing this, we will all then come to understand “there is a systemic and gross underestimation of the capacity of all people diagnosed with deMEntia, even in the later stages of the disease.”

Late stage management of dementia is still prevalent, and continuing this will have a significant cost, not only to the well being and Quality of Life of people with dementia and our families, but also on our economy.

  • In spite of often receiving earlier diagnoses, we are still being Prescribed Disengagement®, i.e. being told to go home and die via aged care, as if there is ‘nothing that can be done’
  • We are not provided with rehabilitation or other re-abling post diagnostic support
  • We are not being provided with the same disAbility assessment and support as every other person with an acquired disAbility receives
  • These points are all relevant to national dementia plans

By harnessing the UN CRPD and other Conventions in policy and national dementia strategies, we will:

  • Significantly improve the quality of life of persons with dementia and our families and care partners
  • Increase independence
  • Reduce the economic cost of dementia to individuals, families and governments
  • Ensure dementia inclusive and accessible communities

The CRPD is relevant to persons with dementia and there can be little doubt that persons with dementia are addressed by the definition of disAbility in the Convention, and are therefore intended beneficiaries.

The WHO Global Disability Action Plan 2014-2021 is fully based on CRPD Principles and Articles, and it also has good indicators for assessing progress. Hence this also means CRPD must be reflected in regional and national dementia plans and strategies.

The WHO Global Action Plan: A Public Health Response to Dementia set the stage in May 2017. Governments, in partnership with civil society, people with dementia, their families must start now by preparing national dementia plans in their own countries, which incudes a human rights approach to dementia. As I understand it, the only truly accountable parts of the Global Action Plan are the 7 cross cutting principles.

Community Based Rehabilitation (CBR) needs to be considered when implementing this Action Plan into policy. CBR is an important part of human rights, and of dementia friendly communities. The aim of communitybased rehabilitation is to help people with disAbilities, by:

  • Establishing communitybasedprograms for social integration, equalization of opportunities, and physical therapy rehabilitationprograms for people with any type of disAbility
  • This is important in the context of the GDAP and in the development of national policies.

For our communities to be supporting people with dementia, based on human rights, a  new pathway of support is needed. It is also part of being a dementia friendly society, as without adequate health care and disability support, it won’t matter how many dementia friends programmes a country has, there will be very little tangible difference to our lives.

We need a new pathway of psycho social and disAbility support to live with, not only die from dementia, which is not based on deficits, and does more than assess ADL’s and medication.

  • Timely Diagnosis
  • Focus on well being/QoL
  • Acquired Brain Injury rehabilitation post Dx, that includes Speech pathology, Neuroplasticity, Occupational Therapy, Neurophysiotherapist.
  • disAbility assessment and support , immediately post diagnosis
  • Grief and Loss counselling, not just information about BPSD.
  • Peer to peer support groups for oeople with dementia, our care partners and families, and especially our children
  • Support to maintain pre dx lifestyle
  • Support to continue working if YOD (and is a personal choice)
  • Support to continue usual activities, socialising, sport, recreation, community engagement, etc
  • Inclusive and accessible communities (not just dementia friendly)

It is also imperative we focus on risk reduction strategies – e.g. life style changes (as we do for other chronic diseases).

DAI’s Next Steps:

  • Working with countries and civil society to ensure human rights and implementation of CRPD, SGD’s and CBR
  • Supporting Alzheimer’s societies in developing HR policies & plans
  • Continuing to submit parallel reports to the UN and the WHO
  • Promote human rights approach to dementia at all conferences and events
  • Raising our concerns about human rights of persons with dementia in WHO Disability Policy, CBR and regional and national dementia strategies
  • Working with disability organisations, e.g. IDA and IDDC

DAI is open to suggestions, advice, and above all support from all organisations and groupings of or for people with dementia. Some of our recommendations include:

  • Engaging with the United Nations Committee on the Convention on the Rights of Persons with Disabilities (CRPD), including through policy making processes
  • Seeking to develop productive relationships with the global network of National Human Rights and Disability Rights Institutions, e.g. the International Disability Alliance
  • Preparing and disseminating widely information, and developing policy on the UNCRPD and the rights of persons with dementia
  • Encouraging and supporting national and regional groups and organisations to participate in the examinations by the United Nations Committee on the Rights of Persons with Disabilities and other Conventions.

Finally, I have some questions for countries and civil society to consider:

  1. To what extent are your dementia policies based on human rights?
  2. How closely do you work with other disAbility organisations in your country or region?
  3. Do you know how they have used CRPD?
  4. Will you join them to ensure that people with dementia are included?
  5. How are we going to measure 75% of countries have implemented the GDAP by 2025?

Thank you.”

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

Thank you John Sandblom

Representing DAI in Italy recently, co-founder and Treasurer John Sandblom from the USA gave a brilliant speech on World Alzheimer’s Day in Milan, supported to attend this event with his wife Cindy, by Alzheimer’s Italia. We believe he is the second person diagnosed with dementia to have presented publicly in Italy, and thank one of our pioneer advocates and a DAI Board member, James McKillop for leading the way there, as he presented in Italy in 2004.

DAI Webinar: “Peer support groups and assistive technology: An Italian perspective”

Please register for our next DAI online “A Meeting Of The Minds” Webinar, “Peer support groups and assistive technology: An Italian perspective”.

  • October 25, 2017: 3:30 PM Chicago (CDT) USA
  • October 26, 2017: 7:30 AM Sydney (AEST) Australia

This event is being hosted by Dementia Alliance International (DAI) and is available online as a Webinar. Although it it set in a number of time zones, it is only ONE event.

About the hosts:  Cristian Leorin is Co-Founder and President of Novilunio Onlus; Eloisa Stella is Co-Founder of of Novilunio Onlus. They are both passionate about empoweing and hearing the voices of people with dementia, and Eloisa has been a very active supporter for DAI, including providing many Italian translaions of our materials.

About the Webinar:  In this webinar, Eloisa Stella and Cristian Leorin, co-founders of Novilunio, will provide an overview of how dementia is experienced and perceived in Italy and their efforts to promote a culture of positive change in their country. Founded in 2014, Novilunio is a non-profit organization that offers online and offline resources and activities inspired by a humanistic approach to living with dementia.

The speakers will introduce Novilunio’s new network of online peer support groups for care partners of people with different types of dementia. A network of online groups specifically dedicated to individuals living with dementia – the first of its kind in Italy – is also slated to be launched in 2018 inspired by the good practices of DAI’s peer support groups.

The second part of the webinar will be focused on Novilunio’s approach to assistive technologies, which combines “calm technology” principles with person-centered and human rights-based approaches to supporting people with acquired disabilities within the context of the next generation of connected devices. Such methodology is currently been studied within the EU-funded project REMIND, carried out by a Consortium of 12 European partners, including Novilunio, and 3 universities from Colombia, Argentina, and South Korea.

Following DAI co-founder and Treasurer John Sandbloms’ recent visit to Italy as a keynote speaker to present in Milan, this will be an interesting follow up to DAI’s presence in Italy. We will publish a blog about John’s visit next week, followed by a blog on the great work of our members in Canada th week after.

DAI involved in study to strengthen responses to dementia in developing countries

New £7.7 million study to strengthen responses to dementia in developing countries

Dementia Alliance International is pleased to be involved with this new study, announced yesterday. Read the Press release  below:

The London School of Economics and Political Science (LSE) is to lead a £7.7 million project to build research capacity and provide much-needed evidence on dementia care in seven low- and middle-income countries. This work will support the development of national policies for dementia in the face of rapidly growing global numbers of people with the condition.

Funding has been awarded by the Research Council UK (RCUK) through its Global Research Challenges Fund, which aims to ensure that UK research takes a leading role in addressing challenges faced by developing countries. The research is led by the Personal Social Services Research Unit (PSSRU) at LSE, in partnership with the Universities of Sussex and Cape Town, Alzheimer’s Disease International and Dementia Alliance International. The project – called STRiDE (Strengthening responses to dementia in developing countries) – will help to improve dementia care, treatment and support in seven countries, including India, Indonesia, Kenya, Mexico and South Africa. It will do so by strengthening capacity in those countries to develop and sustain effective care and support for people with dementia and their families.

The project will examine current practice, both at a national level and for individual families, both to help people living with dementia to live well, and to ensure that family and other carers do not face excessive costs that could impoverish them or compromise their own health. A core activity will be to understand the impacts of dementia in various cultural, social and economic contexts in order to support development, financing, planning, implementation and evaluation of National Dementia Plans.

Professor Martin Knapp, Director of PSSRU at LSE, said: “Dementia affects more people in low- and middle-income countries than it does in the UK or other high-income countries, yet few countries are prepared for the challenges of the growing number of people with dementia. Our project is ambitious, but it is urgently needed. We aim to provide research-based support to enable low- and middle-income countries to provide truly effective support for people with dementia as well as the wider community.”

Kate Swaffer, Chair and CEO of Dementia Alliance International, said: “The STRiDE project will build capacity for research for dementia in low- and middle-income countries (LMICs). It will also generate new research evidence on the economic case for investing in better dementia care, and support the development of national dementia plans across a range of countries. Following the recent adoption of the WHO Global Action Plan for Dementia, this is imperative, as national strategies and better investment in research and care is needed in all countries, but this is especially so in the LMICs.”

Paola Barbarino, CEO of Alzheimer’s Disease International, said: “The STRiDE project will give a deeper insight into each nation’s economic challenges related to public health and dementia. This will better prepare us for the negotiating challenges ahead.”

Dame Minouche Shafik, LSE Director, said: ““The number of people living with dementia is growing, creating a challenge with which many countries in the developing world are ill-equipped to cope. This funding will enable researchers and Alzheimer’s organisations to collaborate in order to understand what is working, and what isn’t, in order to improve dementia care where it is most needed”.

STRiDE will run for 51 months from October 2017. Further detail is available on the project website (add link).

For more information contact the project leads, Professor Martin Knapp or Adelina Comas-Herrera, at [email protected]

Jess Winterstein, LSE Media Relations Office, 020 7107 5025, [email protected]

Notes for editors:

For more on the Research Council UK’s Global Challenges Research Fund, see: http://www.rcuk.ac.uk/funding/gcrf/

SUSAN SUCHAN WINS 2017 RICHARD TAYLOR MEMORIAL ADVOCATES AWARD

Today on World Alzheimer’s Day 2017 we announce Susan Suchan as the recipient of the prestigious DAI Richard Taylor Memorial Advocates Award. Congratulations Susan.

From Oklahoma in the U.S.A, Susan Suchan is a loyal, fun loving and tireless DAI member and has been a very active member of many other advocacy and support groups around the world. She has ensured through her own actions and dedication to all people with dementia, which not only speaks to us in the same way Richard’s incredible legacy lives on, but also her own very impressive and gracious personal and advocacy legacy lives on.

Congratulations and thank you Susan, for being the generous, loving and truly inspirational woman that you are, and special thanks to your family for their support of you and your work (and therefore the work of all advocates).

 

Watch Susan finding out she is the recipient of the award for 2017 in an introduction by DAI Chair, and a conversation with DAI board member, Brian Le Blanc:

Susan thoroughly deserves the 2017 Richard Taylor Memorial Award for her service to DAI, and although Richard was one of eight DAI co-founders, she have devoted herself tirelessly to carrying on the work and advocacy for all people with dementia, in spite of her changing health. Susan is a role model to the millions of people already diagnosed with dementia, and one that most of all, we are all honored to call a friend.

DAI is very proud of Susan, and thanks her for her tireless work, patience, humour and support of our members. She are extremely deserving of the 2017 Richard Taylor Memorial Advocates Award. Congratulations from us all.

Here are some quotes from DAI members on why Susan deserves this award, as told to us by either by those who nominated her, or those who know her well and have seen her shining example of advocacy:

“Susan is a beautiful lady with a grateful heart, and represents dementia positively rather than as a “death sentence”. She sees it as a new journey worth every bit of fighting to live and to use her strengths, rather than focus on what she can no longer do. She struggles daily without giving up, or into others claims. Like Richard Taylor, she is not afraid to tell it as it is. Richard always said ‘stand up and speak out’, and Susan continues to do that, with grace and love. She is grateful for anyone’s help, recommendations and actions, and always speaks and acts with love.”

“Susan Suchan is a role model to all people with dementia, she herself living with a form of dementia that includes Primary Progressive Aphasia, which has impacted her ability to communicate easily. In spite of this, she continues to speak out tirelessly, and has worked with a documentary team to tell her story, to ensure her legacy also lives on. Her quest to improve the world for others also diagnosed with dementia is remarkable, and is aligned with the values the late Richard Taylor, and also inspires so many DAI members.”

“In spite of the very real negatives of dementia, Susan has chosen to see the experience as a gift and an opportunity. Susan has chosen to accept it with grace, and through your wisdom and love, has given herself to the world, working for others, and with an acceptance of dementia and all it brings. Because of dementia, we have all had a chance to meet one of the true heroes of dementia.”

Susan Suchan is my vicarious living brilliantly beyond dementia advocate example – A ‘CAN DO’ focus in a failing body but a victorious inclusive spirit, exudes hope, joy and fight for those doing it OK and those for who it is tough – touched by dementia with all its tentacles of influence worldwide. Always looking outward, upward and around to include everyone. A true champion and worthy recipient of the Richard Taylor Memorial Advocates Award.”

Dear Susan, We may not have met in the flesh, but we are kindred spirits. Devoting our lives, to help those who will follow in our footsteps. I have read some of the wonderful things you have done, and I am lost for words in admiration. If ever there was, a worthy recipient of this prestigious award, then it is you. Keep up the good work.” 

“CONGRATULATIONS sweet Susan! You SO deserve this award, we are all SO proud of you . You were one of the first people I met in person 6weeks after my diagnosis of FTD. I will never ever forget your kindness, friendship, laughter & support . You were & still are like a beacon of hope to all of us living with dementia . YOU are truly an inspiration to many & loved by so many . Thank you also to your precious family who have supported & allowed us to ” share ” you! You Rock xxxxx” 

You can tune into her documentary updates here… 

Of, By, and For People with Dementia

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