Category Archives: Alzheimer’s Disease International

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.”

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… 

World Dementia Council Global Care Statement

Following the adoption of the WHO Global Action Plan on the Public Health response to Dementia in May, it is pertinent to give our members an update on some of the work of the World Dementia Council. As Chair of DAI, I am a full member, and as the work of the world Dementia Council evolves, we will have more to report. For now, I’d like to highlight a small piece of work done by the Care Global Team of which I am also a member of.

Announced by the WDC on May 25, 2017;  

The Global Care Statement sets out two Calls to Action, which are designed to help ensure these rights. These call for all of the world’s governments and governing bodies to adopt, implement, and ensure high-quality, person-centered care and support for people living with dementia; and for all health and social care systems to fund and provide access to high-quality, person-centered dementia care and support services.

It also includes eight important Principles of High Quality Care and Support, including for individuals to receive a timely and accurate dementia diagnosis; for people living with dementia to be treated with dignity and respect; for communities to be inclusive of people living with dementia and encourage their engagement in the community; for dementia care to be person- and relationship-centered and based upon continuous assessment and individualised planning; and for people living with dementia and their care partners to be active participants in care planning and decision making.

The principles also express the need for medical and care professionals to be knowledgeable of all aspects of dementia and to work across disciplines to ensure a holistic approach to disease management; and for care coordination and collaboration to occur between all care providers, including in monitoring and evaluating the care and support provided.

You can download the full Care statement here.

There are many academics and professionals publishing articles and writing books on improvng care,  in the acute, residential and community care, and I’d recommend looking up books by Dr Shibley Rahman and Dr Al Power.  Many people with dementia have also published books, and are full of anthropologcal evidence of their experiences, and what they want in their care.  If you purchase through Amazon, you can donate to DAI via Amazon Smile.

Have a great day!

Kate Swaffer, Chair, CEO & one of eight co founders of DAI

 

Human Rights: from Rhetoric to Reality, #ADI2017Kyoto

This key note presentation was given by co founder of DAI, Kate Swaffer at the ADI conference held in Kyoto in April 2017. The WHO and others are now taking human rights for people with dementia seriously, this is an introduction about why it is so important, and the role DAI has played in the World Health Assembly adoption of the WHO Global Action Plan for a Public Health Approach to Dementia in Geneva in May.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia – go to www.joindai.org to complete the membership application form

Or you can subscribe to our newsletter or weekly blog by visiting us at www.infodai.org

We need to ‘Think Outside of the Box’ by John Quinn

A few weeks ago at the ADI2017 conference in Kyoto, DAI and DAAT member John Quinn  gave a great presentation  We Need to ‘Think Outside the Box”, especially in relation to rehabilitation enablement and dementia. Thank you John for allowing us to showcase it here.

His power point slides can be downloaded here  We need to ‘Think Outside of the Box ’_John Quinn_ADI Kyoto2017 and his full speech notes are below:

“A friend of mine was diagnosed with Fronto-Temporal Dementia. He used to be a truck driver and tinkered with cars and engines most of his life. But only 18 hours after he had MRIs etc that resulted in his diagnosis, he lost his licence. He felt that his whole life had shattered. At the time, he was in his mid 40s, with four children. His wife had to return to full time work to continue paying off the mortgage and to support the family. But by the time he was 50 years old, when his youngest child was 7 years old, he was placed into a Care Facility, because there was no one at home to care for him. The average age of the other residents was about 85 years old. He felt hopelessness… and also a failure, because he couldn’t provide for his family.

There was no immediate rehabilitation for him, however; soon afterwards, his friend told him about a group of men who were rebuilding an antique truck. Years later, they still catch-up every week to work on this project together. Now he is proud of what he is achieving albeit small steps. In time, the organisers hope that there’ll be a restored, functioning, antique truck available for street parades, TV advertisements and movie sets.

This is an example of what rehabilitation might look like. OR is it enablement? OR… is it empowerment?

In some health areas, for example with various forms of addiction, the word enablement has different connotations than in the Dementia arena, so we must be mindful of the meaning of words here, too. Also, I’ll later refer to how I felt disempowered by others, then later with time and unexpected support, regained the sense of feeling empowered. Some of us who live with Dementia are advocating for the correct use of language in the media and within our Communities. Perhaps here is another area where better awareness of language can improve our lives. Whatever the correct word is, the result should be better outcomes for people living with Dementia. Here in this context, for simplicity, I’ll use Rehabilitation and Engagement interchangeably. However, it will only be effective if it empowers us.

In an ideal world, some types of rehabilitation relevant to the person’s current life and the personal symptoms of Dementia should be offered at the time of diagnosis. Everyone has a Right to Rehabilitation to his or her changing abilities, BUT let’s not dismiss ANY type of rehabilitation. We need to ‘Think Outside of the Box”, for the best outcomes to empower us. Everything with value will be valuable!! Who determines what is valued? I believe that it must be the person with the diagnosis in the first instance. This type of conversation and the ensuing negotiation is relevant regardless of the age of the person living with Dementia.

However, it is more important when someone young is diagnosed, as there is an emerging realisation that when a younger person is diagnosed with Dementia at the earliest opportunity, there will be a longer period of successful engagement with his or her current lives. Immediate support and contact with someone who can guide the person living with Dementia and their family through this tumultuous life-changing period, would maintain some hope for the possibilities for the future; and, feelings of being valued as a person who can still contribute to their family and society.

At least in my own case, I believe that I still could have had a sense of purpose and self esteem… But I lost them when I lost my career. The career that I loved and was respected in, had taught me skills and knowledge for 35 years. Yet suddenly, in 2008, I not only couldn’t do it due to my symptoms, I didn’t have the opportunity to return to it with support or adaptations post diagnosis.

Interestingly, for the past two years, with encouragement and lots of support, I’ve been able to use those skills that I learnt throughout my lifetime in my career… in my advocacy. This advocacy has also opened many new pathways and opportunities for me, that I couldn’t have envisaged, and I value that. Through my advocacy, I’ve met new, genuine lifelong friends; I’ve had the opportunity to meet with people who inspire many; and I’ve been to places that I wouldn’t have considered before. I’ve regained a passion, a focus and a purpose again. Prior to this, I’d felt that everything about who I was, had been taken away from me…..by Dementia, and by the responses of those who could have offered support if they’d only looked at me as the person who I was…………not just as Dementia.

I can’t learn new things easily. I get lost in the process and if I do manage to learn new things, it takes an enormous amount of time and effort on my part, and patience by others. However, I still had, and still have, many skills and expertise in particular areas that the post-diagnostic model forgot to address or encourage. In my case I was an educator…..a School Principal or Deputy Principal of large Primary Schools. Therefore, I spent my adult life in education, learning new things and mentoring others; encouraging both the students and fellow educators to engage in learning skills and knowledge for a successful life. In other words, life long learning

But who else was I? What else was I passionate about?

I’ve always been a caring person and a family man.

But also, what comes to mind is my interest in active participation in sports. I not only trained and encouraged the students in a number of sports, at the school that I was at, but I also enjoy being a spectator of many sports.

During the last 25 years, I’ve run 3 marathons, about 20 half-marathons, a triathlon, and 30 charity fun runs, so as you can imagine I’ve always been reasonably fit. However, I have also participated in many challenging feats in recent years since my diagnosis, such as the Great Wall of China half-marathon, and climbed Mt Taranaki in New Zealand. In addition, since I started being involved with advocacy, I’ve also used my athletic ability to raise much needed funds and awareness in 2 separate challenges…..cycling through Vietnam and Cambodia after buying a bike when I couldn’t drive any longer; and walked our second Camino de Santiago, 825 kms from France across the top of Spain. Whist I could do the physical challenges they wouldn’t have been possible without the support of others, particularly my partner Glenys who did the planning, organisation and problem solving to ensue that I was able to successfully undertake these events.

So each one of us already had expertise, interests, and passions prior to our diagnosis, which if acknowledged and carefully nurtured and encouraged, can enable us to remain independent and interested in engaging in our future lives, albeit with some adaptations and support where necessary.

We need to look beyond the deficit model of what we can’t do, and instead look at the skills and knowledge that we already have. Board-certified Internist and Geriatrician, Dr Allen Power agrees…In his book ‘Dementia Beyonds Drugs’, he states…“Although there are cognitive deficits, many complex abilities are already preserved, which should be identified and cultivated”…..Others in the medical field; allied health professionals; Governments and organisations; and, our family and friends, need to get on board with this concept to encourage us to maintain our skills; and, provide individualised personal programs and career support, so that we can continue to be independent for as long as possible.

I already know what I can’t do. I knew about them years before I received an accurate diagnosis. I’m reminded of them daily when I get confused or frustrated, knowing that everyone is thinking at a different speed and level. I am particularly reminded of them, when I travel; have the rare late night with my son at the football; or, after the many social interactions that occur throughout each day. And strangely, I’m subtly reminded of them when some people challenge my diagnosis, because I can interact with others and I’m reasonably fit, therefore don’t look like I have Dementia. However, they don’t see how I can’t function for hours, after engaging in most activities.

Please don’t misunderstand me though. The type of rehabilitation that people usually think of, is also very important, for example, Occupational Therapy, Speech Therapy, Physiotherapy. However, when it’s Dementia, aren’t these therapies really enablement? I’m never going to rehabilitate back to close to my former self, as I may have after a stroke or heart attack.

In about 2011, after my diagnosis, Glenys said to my neurologist that she was aware that there are Speech Therapists who specialise in rehabilitation after a Heart attack or Stroke. She questioned whether there was one who specialised in Dementia, to hopefully provide some strategies and knowledge that we didn’t have, that might assist us in our daily communication……His reply was that he’d never been asked that question before.

There have been some changes though. This time last year, we were asked to give the Consumer Perspective to the Australian Federal Minister for Health on a new government document for People with Dementia. This document has some excellent points enmeshed in the 109 ‘Principles of Care’.

There are two references to accessing Speech Therapists…..But we also need speech/language therapy for people who have word finding, processing problems, or other language concerns etc, like I have?

The medical profession needs to consider authentic rehabilitation which is vital for younger people living with dementia or those early in the dementia process. Are some attitudes because dementia is a terminal condition for which there is no cure? I don’t know…..However, through my involvement on a national committee where up to 40 different research activities are currently happening, I’m aware that there’s some good, innovative research that includes a focus on empowerment. So there’s emerging hope for a change in attitudes.

I have personally done a little research on what can impact on the progression of Dementia and what keeps our brains healthier…..things like the effects of music; and learning new languages and skills. As a result I’ve formed an acronym….It’s my N.A.M.E.S……names….N for Nutrition; A for Attitude and Acceptance; M for Mental activities, Music and Meditation; E for Exercise and Enjoyment; and S for Support, Sleep, Socialisation, and Setting Goals. Some of the activities that I engage in for my NAMES, include, learning Spanish; doing crosswords with my non-dominant hand; volunteering each week; advocating; writing to the Editor of the local newspaper; and, writing a blog. My N.A.M.E.S. keeps me on track to do what I believe will help me.

I want you to consider these questions. What value do our existing skills hold? What value is there in learning through experience rather than in isolation, for example, in a one-on-one class with a therapist? What value do we place on participation with fun, social engagement? How can we be empowered through support and opportunity to live as independently and as fulfilling a life as possible? I’ll finish with another quote by Dr Allen Power, in “Dementia Beyond Drugs”. Well-being is not dependent on cognitive and functional ability and should be maximised in all people. There has to be a paradigm shift in the way we view people with Dementia

Thank you.”

World Health Organization adopts Global Action Plan on dementia

(Left to right) Professor Peter Mittler, CBE, Human Rights Consultant to DAI and ADI, Paola Barbarino, CEO, ADI and Amy Little, Executive Lead, GADAA

The World Health Assembly today adopts the WHO Global Action Plan for a Public Health Approach to Dementia in Geneva.

We are delighted DAI member and Human Rights Consultant, Professor Mittler CBE arrived on Friday and took  the baton from me to represent us all, along with Amy Little, Executive Lead of GADAA. Paola Barbarino, ADI’s CEO was privileged to make a statement on behalf of  ADI and although it is not in the text of her statement, in the video recording of her speech, she specifically thanked DAI and GADAA for our contribution to this very important work.

ADI stated in their media release, “The plan opens a new era in understanding, care and treatment – but governments must act now. The plan acknowledges that dementia is not a normal part of ageing and that those affected should be helped to live as well as possible.”

Listening to the speakers on the live feed broadcast, I have felt that the global community and governments are taking this very seriously, and feel hopeful change will take place. DAI does have some reservations (read our response below), as do many others on the human rights elements of the plan, and how this plan will be implemented,  evaluated and monitored. Feeling optimistic…

The following is DAI’s full response to the Global Action Plan for a Public Health Approach to Dementia:

We wish to applaud and recognise the leadership of Dr Saxena and Dr Saxena and their team, and also that of Dr Margaret Chan at the World Health Organisation. We greatly value their vision in working on this plan, the process of consultation with all stakeholders, and their efforts to provide this plan in record time of approximately six months. It is a plan which seeks to meet the needs of people with dementia, and their families.

At the side event last week co hosted by DAI, ADI, GADAA and the Swiss Government, I was asked why a global action plan has been so important to me, and in my speech, this is one of the things I said;

“We need this plan because care is failing, and research for a cure is failing.”

With regard to the global action plan, whilst we are delighted it has been adopted, DAI wishes to ensure Health Ministers are aware that people with dementia and their care partners are rights bearers in the 173 Member States legally committed to the UN Convention on the Rights of Persons with Disabilities by ratification.

This was reflected in the WHO’s First Ministerial Conference in 2015 when Dementia Alliance International (DAI) included Access to CRPD as one of its demands. It was later followed by a rights-based resolution presented by Alzheimer’s Disease International (ADI), reflected in the first of the General Principles in the Director’s Concluding Call for Action.

Within the Global Action Plan for a Public Health Approach to Dementia, human rights, empowerment and accountability are characterized as three cross-cutting principles.

Ten years after the adoption of the CRPD by the UN General Assembly, these principles cannot be realised without full commitment to the General Principles and 33 Substantive Articles of the CRPD and its Optional Protocol.

This is also reflected in the WHO’s Global Disability and Development Action Plan, its revised Guidelines for Community-Based Rehabilitation and in its new Quality Rights Indicators for Mental Health (including dementia).

All Member States who have ratified the CRPD will be aware of its precise requirements for citizens with other disabilities. These include an obligation for;

“States Parties to closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations… in the development and implementation of legislation and policies to implement the present Convention” (Article 4.3).

Ten years after the Convention, States Parties have provided little evidence of including persons with dementia in its implementation or monitoring. This may reflect a widespread perception that people with dementia are not rights bearers under this Treaty, and could also be seen an example of systemic discrimination, although not intentional.

We must always remember, people with dementia are fully recognised by the UN as CRPD rights bearers.

Furthermore, Health Ministers must have been involved in the response of their governments to the CRPD Committee in relation to people with sensory, physical, intellectual, mental health, cognitive and other disabilities.

Following representations by Dementia Alliance International and Alzheimer’s Disease International, the CRPD Committee has responded to our joint request to make it clear to Member States that persons with dementia and their care partners are fully included in the implementation of the CRPD on the same basis as those with other disabilities.

This year, dementia has been specifically mentioned in the review process on Canada and in a Parallel Report submitted by Disability Rights UK in the ongoing review of the UK government. Dement is now described in UN documents as a cognitive disability.

This issue was also discussed at the 2016 UN Social Forum on the Convention, particularly at a session on Under-Represented Minorities, which included DAI. The UN Special Rapporteur on the Rights of Persons with Disabilities chaired the session in the presence of the UN representative for all Geneva-based UN agencies.

The 1948 United Nations Declaration of Universal Human Rights and all subsequent Human Rights Treaties can now enable the 50 million people living with dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.

It is pertinent to remind us here, that 67 years after the 1948 UN Declaration, in 2015 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.”

All of civil society must work towards changing this, and there is a distinctive role for the WHO as Secretariat to the Plan to “offer technical support, tools and guidance to Member States”.

We therefore assume that, in the next phase of implementation, the WHO will ensure that Member States use the accountability framework of the CRPD as set out in Cross Cutting Action 10 (a) of the Plan.

We ask for the support of all Health Ministers and their governments to enable the 50 million people now living with dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.

Finally, it is now up to all of us to campaign and work together collaboratively, to ensure all people with dementia and our families are treated with the same rights, and equal access to health, disability support, dignity and health care, and are included,  the same way as every other person in society.

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

New Opportunities from the Global Action Plan on Dementia

A side event at the 70th World Health Assembly

25 May 2017 | 17.30–19.30 Hotel Intercontinental, 7–9 Chemin Du Petit-Saconnex, Geneva

We are delighted to invite you to attend a special side event chaired by Tania Dussey-Cavassini, Vice-Director General, Ambassador for Global Health, Swiss Federal Office of Public Health and Paola Barbarino, CEO of Alzheimer’s Disease International.

This event will feature an expert panel from governments, the World Health Organization (WHO) and key stakeholders, to encourage discussion on the opportunities from the WHO Global Action Plan on the Public Health Response to Dementia 2017-2025 submitted for adoption during the 70th World Health Assembly.

Nearly 50 million people live with dementia worldwide and this number is growing by 9.9 million each year – the equivalent of a new case every 3 seconds. Momentum is beginning to build through collective working on research, policy making and community action to find a cure and effective support for those living with the condition. Global interest in dementia is growing, with comparisons drawn to the early stages of global movements on HIV/Aids and cancer. However, there is still a long way to go.

We believe that this event will be of high importance to those attending the Assembly from around the world and will be an additional opportunity to strengthen implementation of this key Action Plan, and the development of national plans on dementia globally.

This event is co-hosted by Switzerland in partnership with Alzheimer’s Disease International (the umbrella organisation of 90 Alzheimer associations worldwide), Dementia Alliance International, and the Global Alzheimer’s and Dementia Action Alliance (a broad network of international civil society organisations seeking to champion global action on dementia).

The provisional list of speakers include Dr. Naoko Yamamoto, the Assistant Minister for Global Health and Health Industry Strategy from Japan,  the Minister of Health from Indonesia, Dr Shekhar Saxena or Dr Tarun Dua from the WHO, Amy Little from GAADA and Kate Swaffer representing Dementia Alliance International. The full program is still being finalised, but it will be a full program with a lively Q & A session at the end.

DAI’s Peer to peer support groups, by John Sandblom

We are starting Dementia Awareness Week UK, with a presentation by DAI co-founder, John Sandbom on the value of Peer-to-peer support groups. If you live in the UK, and want to get involved there this week, follow the link in the image here.

As part of the support the DAI offers its members, it has online support groups for members that meet from around the world.
During a presentation made at ADI2016, Eileen Taylor, a current board member and the secretary of DAI said:

“As I said earlier, from a personal perspective, since finding and joining DAI, and being involved as I am, has certainly been a very empowering experience, to belong to such a group. As you can see and hear, I’m talking to you today, and have recently become the DAI secretary, and co-host, of two of the online support groups. So I thank DAI, for having faith in me, and giving me the opportunity to participate in their work.”

Johns presentation: “DAI’s Peer to peer support groups”

You can download his slides here: DAI Peer to Peer Support Groups by John Sandblom_ADI Kyoto_Friday 28 April 2018

Dementia Alliance International (DAI is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia. Or you can subscribe to our newsletter or weekly blog.

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