All posts by DementiaAlliance

UNIVERSAL HEALTH COVERAGE DAY 2017

A GLOBAL DAY OF ACTION

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

UNIVERSAL HEALTH COVERAGE (UHC) DAY

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

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

THE IMPORTANCE OF UHC FOR DAI

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

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

 

NCD Alliance Forum in Sharjah update 1

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

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

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

Promoting the meaningful involvement of people living with NCD’s

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

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

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

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

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

The voices of people living with NCD’s

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

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

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

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

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

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

Re-defining dementia

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

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

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

Following a diagnosis of dementia

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

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

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

Why a rights based approach to dementia

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

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

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

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

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

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

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

Thank you.

Spirituality and Dementia

Culturally, it is easier to understand someone in Africa or Nigeria believing a person with dementia has been taken over by evil spirits. What is not acceptable, particularly in a developed country, was to discover recently that some  Christian Leaders are blaming people with dementia for having the disease, telling them they must be sinners.

Unfortunately, DAI has had many members who have had this experience recently, from countries including the USA, UK and Australia. And whilst not all of our members have any kind of Christian or other Faith or Spiritual beliefs, it is definitely not kind, or true, to tell someone they have dementia because they are sinners.

Thankfully, we also know many Churches are actively working towards welcoming people with dementia, and many are even working towards becoming dementia friendly, which is wonderful, but those who blame us for having dementia becasue ‘we are sinners’ need a lot more than education or awareness…

As a way to support our members, DAI decided to the best solution was to host an online non-denominational Inclusive Christmas Worship Service next week.

It is being held for our DAI members (or indeed, anyone with dementia), and their family and friends. Members will have today received details on how to join via email. We hope this will be the first of many, and are thrilled Jim Spiker from Adelaide has agreed no only to get up early to lead it, but was willing to learn about Zoom!

Jim has been involved in Chaplaincy ministry since 1976. He has worked in schools, industry and workplaces, and for the last 17 years, as an Aged Care Chaplain in South Australia. His theological training was with Churches of Christ and he was involved in part-time parish work alongside his chaplaincy work on several occasions. Jim enjoys reading across a broad range of subjects from Terry Pratchett to Neuroscience and a fair smattering of theology and philosophy. He is keen on environmental work and is an active bird-bander in a local conservation park. Jim and his wife Anne love keeping up with their children and grandchildren and often rely on Facebook to read what they are all doing. The current excitement is getting ready for a dachshund puppy to arrive as his 70th birthday present.

One of my friends, also a DAI member and a long time campaigner Ken Casper from Durham in the UK, has written about spirituality on his blog called How feelings change in dementia. It is an interesting read, and I’ve had many discussions with others either gaining faith, or losing their faith after being diagnosed with dementia. It would be a reallyinteresting topic to study further, if I wasn’t already so busy!

We look forward to seeing our members and their partners, families and friends online other next week or the one after (or both!) at our end of year (non denominational worship service, and our non religious) festive season celebrations. If you are a person with dementia, but not a member of DAI, you and your family ad friends are still welcome to join us by emailing us at [email protected]

Best wishes for a joyous festive season, one and all.

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

Celebrating the International Day of Persons with disAbilities

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

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

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

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

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

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

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

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

Please support DAI on #GivingTuesday 2017

This coming Tuesday is #GivingTuesday, when all Registered Charities will receive  101% of donations through PayPal, with PayPal Giving Fund. This therefore includes Dementia Alliance International (DAI).

DAI empowers and supports people with dementia to have a voice, and to live positively with dementia, rather than just go home and die from it. 

Our co-founder, and Treasurer, John Sandblom, recently received the following information:

“Thank you for being a part of PayPal Giving Fund. Since 2015, we’ve granted more than $100 million to charities like yours. Now the holiday season is approaching – a crucial time for charity fundraising.

From November 28 through December 31, PayPal will add 1% to all donations made to benefit your charity through PayPal’s Holiday Campaign Donate page and the PayPal app. #GivingTuesday donations really add up – in 2016, PayPal users donated a record-setting $48 million on this global day of giving.”

And with #GivingTuesday just over two days away, DAI can benefit even more from your generosity.

We want you to know that 101% of holiday donations made through PayPal’s Holiday Campaign will be delivered to DAI using this unique link: “www.paypal.com/fundraiser/charity/146240“.

PayPal are also very committed to supporting this fundraising opportunity with extensive promotions, advertising, and special events.

Whether you can afford only 1, 10, 50 or 100 dollars, pounds, euros (or whatever currency you use), please do know that it will make a HUGE DIFFERENCE TO THE LIVES OF PEOPLE DIAGNOSED WITH DEMENTIA.

Please note,  if you don’t have a PayPal account, you can still donate here:  https://www.dementiaallianceinternational.org/donate/

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.