Category Archives: Human rights

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.

Dementia and disability rights #DAW2017

The last few years, in particular for people with dementia representing themselves and since the WHO First Ministerial Conference on Dementia in March 2015, the pace of the activity towards a human rights based approach to dementia that also includes full access to the CRPD and other Conventions has been a major focus of DAI. Our newly appointed Human Rights Ambassador Professor Peter Mittler CBE presented last October in Geneva at the Social Forum, and his speech then is as relevant today as it was then. Next week, at the World Health Assembly being held at the WHO in Geneva, the Global Action Plan for Dementia ia expected to be voted in. For now, read Peter’s speech notes from last October as they explain well why people with dementia are pursuing disability rights. Thank you Peter.

Social Forum, October 3-4, 2016 

Professor Peter Mittler CBE

Side Event: Under-represented groups of persons with disabilities

By Professor Peter Mittler CBE, University of Manchester and Human rights Advisor to Dementia Alliance International

“Thank you for giving me this opportunity to speak about the human rights of people living with dementia.

I’m the Human Rights Advisor to Dementia Alliance International and I’m here because 50 million people with dementia world-wide have been excluded from the CRPD by governments legally committed to it through ratification.

DAI was created in 2014 for the main purpose of achieving our human rights through the CRPD. All of us have a medical diagnosis of dementia. We now have 2,500 members in 38 countries and communicate through the internet and social media, run eight weekly support groups in different time zones and provide seminars led by our members or by leading professionals, researchers and policy makers.

Although people with dementia are indisputably included in the characterisation of disability in CRPD Article 1, governments are not including them in their implementation of the Convention. This may not be intentional but reflects a wide-spread perception that dementia is an illness, not a disability and therefore the responsibility of Ministries of Health rather than across government. This could be considered as an example of systemic discrimination against millions of people.

Furthermore, several countries and two regions -Europe and Latin America- have launched dementia strategies which don’t appear to have drawn on CRPD Principles and Articles.

WHO takes the view that dementia is the biggest Public Health challenge facing every government and makes fuller use of CRPD than any other UN agency. Its 2014-2021 Global Disability Action Plan fully reflects CRPD Principles and Articles, as do the revised Guidelines for Community-Based Rehabilitation – clearly highly relevant to people with dementia in Low and Middle Income Countries. Its new Quality Rights Indicators are also built on five relevant CRPD Articles.

People with dementia are already being Left Behind in the 2030 SDGs, now being renamed Action 2030. This reflects the absence of the dementia world from the UN global consultations which resulted in the commitment to Leave No One Behind.

The fact that we all live longer than our grandparents means that the number of people with dementia will treble by 2050. The rate of increase will be greatest in Low and Middle Countries, most of which have very limited services, not even diagnosis.

People with dementia face one form of stigma or another in every country. They have been accused of witchcraft and bringing shame on their families, chained to trees and even burned alive. Even in China, India and other countries, the tradition of respect and provision for older people is being eroded by younger people flocking to cities in search of work.

AN OECD study of 37 High Income Countries has concluded that “dementia receives the worst care in the developed world”.

People with dementia don’t like being called ‘sufferers’ but they do suffer from poor services and lack of support to enable them to continue to participate, as they have done all their lives before diagnosis. They also suffer from the social isolation that follows a diagnosis of dementia when friends and family members stop visiting because ‘they don’t know what to say, perhaps out of fear that they too might be diagnosed with dementia or that they might have to support their relative or provide financial support for residential care.

Politicians, the press and even top level researchers and the leaders of some national organisations working for people with dementia talk about ‘demographic time-bombs’, ‘tsunamis’, ‘disasters waiting to happen’ and a ‘world without dementia’. Would anyone today talk about ‘a world without Down’s Syndrome’?

Dementia Alliance International has gone from strength in the last two years not only because new members are joining every week, but because we have taken our demand for human rights to a high level.

In March 2015 our co-chair and founder Kate Swaffer, went to the World Health Organization’s first Ministerial Conference on dementia to make three demands to WHO and 80 Health Ministers at the Opening Ceremony: full and equal access to CRPD for people with dementia; post-diagnostic support and for research on care to be on a par with research on cure.

The following year, Alzheimer’s Disease International adopted a human rights policy which includes access to CRPD and other Conventions for its 85 national societies, in cooperation with DAI. During the Social Forum, we could identify with the experience of other international, regional and regional associations of disabled persons. Words common to all of us included stigma; multiple discrimination (in our case on grounds of old age and gender) invisible disabilities; reasonable accommodation. For people with dementia, being supported to live for as long as possible in the community is particularly important: that’s why we contributed to the UN General Day of Discussion on Article 19 earlier this year.

So thank you for inviting me because until recently, disability and dementia appeared to be on two different planets, each aware of human beings on the other planet but unable to communicate. In the last year, people living with dementia have attended UN meetings, met the CRPD Committee, taken part in the annual Conference of States Parties and this Social Forum.

We want to be part of the global disability movement because we share many of the obstacles to inclusion.”

Peter also wrote an excellent piece for Independent Living recently, DEMENTIA AND HUMAN RIGHTS, BY PROFESSOR PETER.

Introducing the Three Nations Dementia Working Group #DAW2017 Day 3

Three Nations Dementia Working Group

Ken Clasper is a friend and member of DAI, who has also been a long time advocate for people with dementia in the UK, and who is an Ambassador and Dementia Advocate with the Lewy Body Society.  He  is diagnosed as having Younger Onset Lewy Body Dementia, and has “learned to live a new life doing things to help others with the illness”. Ken also says he is “honoured to be a member of Dementia Alliance International”.

His blog yesterday proudly announced the launch of a new Dementia Working Group, and we wish to congratulate the Alzheimers Society UK for supporting this group, as well as the inaugural members of this group. We are thrilled to be able to announce it here as well, as it adds to the every growing list of Dementia Working or Advisory Groups around the world. We are honoured Ken is a member of DAI, and extremely proud to know him, and many of the members of this exciting new Dementia Working Group many who are also members of DAI, Chris Roberts having also been a past Board member.
The image below is from Ken’s website where he states: “We have one member from each of the Alzheimer’s Societies 12 Regions”, and who are listed below. Congratulations to you all.

Members (not in order of appearance in the photograph)

Chris Roberts,  North Wales,  and   Linda Willis,  South Wales 
Danny Brown and Liz Cunningham, Northern Ireland
Ken Clasper,  North East England
Joy Watson, North West England
Wendy Mitchell, Yorkshire and Humberside
Shelagh Robinson, West Midlands
Alex Preston, East Midlands
Peter White,  East England
Hilary Doxford, South West England
Keith Oliver, South East England
Dianne Campbell, London

See the list below of the growing local, regional national or global groups of people with dementia.

2000: Dementia Advocacy and Support Network International (DASNI) http://www.dasninternational.org
This was the first group ever to be set up by people with dementia, but membership was not exclusive to people wit dementia, and the membership base is 2/3 care partners. Apart from a website, there are no specific services, but it is important to know this group of people, of whom four founding members are still active advocates, and all are members is Dementia Alliance International includes Christine Bryden.

2002: Scottish Dementia Working Group (SDWG) http://www.sdwg.org.uk/videos/home/about-us-sdwg/

2006: Alzheimer’s America Early Onset Dementia Advisory Group (AAEODAG) http://www.alz.org/about_us_early_stage_advisory_group.asp

2012: European Working Group of People With Dementia (EWGPWD) http://www.alzheimer-europe.org/Alzheimer-Europe/Who-we-are/European-Working-Group-of-People-with-Dementia

2013: Alzheimer’s Australia Dementia Advisory Committee (AADAC) https://www.fightdementia.org.au/about-us/advisory-groups/dementia-advisory-committee

2013: Irish Dementia Working Group (IDWG) http://dementiavoices.org.uk/group/irish-dementia-working-group/

2013: Japan Dementia Working Group (JDWG); unable to find a website for this group; I also learned at ADI Kyoto there are a number of regional Working Groups for people with dementia in Japan

2014: Dementia Alliance International (DAI) – www.infodai.org and www.joindai.org
Established on 1 January 2014 DAI is the only global advocacy and support group, of, by and for people with dementia, and the global voice of people with dementia. DAI now represents > 3500 members in 39 countries, and is a registered charity in the USA; membership is exclusive to people with a medically confirmed diagnosis of dementia.

DAI is in a strategic but autonomous partnership with Alzheimer’s Disease International, also their major sponsor. It provides free membership, free online support groups, cafes and other services, including educational webinars for the whole dementia community.

2014: Southern Dementia Advisory Group (the only working group to have been in a DFC initiative that has been recognised by the WHO, in 2016) http://www.southerndag.org

2014: Ontario Dementia Advisory Group (ODAG) http://www.odag.ca
This was started as a completely autonomous group by a regional group of people with dementia, and was not funded, restricted or informed by Alzheimer’s Canada, although I believe it is soon to become a national group supported by Alzheimer’s Canada.

2015: Highlands Dementia Working Group (HDWG) http://www.sdwg.org.uk/local-groups/inverness-dementia-group/

2016: DEEP Think Tank (not specifically a working group) http://dementiavoices.org.uk/group/dementia-policy-think-tank/

2016: Dementia Awareness Advocacy Team (Brisbane), presence on web via Facebook Group only at this stage

2017: The Three Nations Dementia Working Group (England, Northern Ireland and Wales) launched this this week, supported by the Alzheimer’s Society UK

 

DAI in Kyoto, Japan

DAI members and many others with dementia had a very positive time in Kyoto for the ADI 32nd conference recently. We all  worked hard to ensure ALL people with dementia AND their families in ALL countries get better support, and DAI provided a platform via its workshop for many to have the chance to speak, who were not on the program.

As always, the deep bonds that the experience of being diagnosed with any type of a dementia, or supporting someone with dementia, brought people together in ways that are difficult to describe.  It is like being in a bubble of love and deep understanding, that others cannot fully understand, and even though as individuals we sometimes have differences of opinions, we are all facing the same things. Even without dementia, we are all going to die, so we are surely better off to just get on and work together anyway.

One of the valuable lessons DAI is learning, is that when a member passes on, or deteriorates to the point of not being able to be an active member, or moves on to do their own thing, we have many others willing to take on roles to support the global community of people with dementia and our local, national and global advocacy efforts. Sadly, because there is a new person being diagnosed with dementia  somewhere in the world every 3.2 seconds, this will always be the case!

DAI’s  workshop had more than 280 people in attendance, and about 13 people with dementia representing 6 or 7 countries, some with their care partners, presented at this event. The one thing that became very clear, as they were all sitting on the stage, is that no one could tell the difference between those of us diagnosed, or our care partners, in terms of who looked like they had dementia. The other things it highlighted as each person or couple told their stories, is that dementia effects everyone differently, and what is a good life to one person is different to another. the late Professor Tom Kitwood was right in talking in terms of person centred care, even though this is generally still rhetoric in care settings. The workshop panel Q & A session was also very interesting.

Informal feedback we received at the conference from many, was our workshop, and the one run by the Japan Dementia Working Group the next day, where I think they may have had more than 300 people attend, were the two best sessions of the conference.  We are  keen to see the formal feedback from the ADI survey that has just been sent to delegates.

We have no idea how to help 50 million people, but ONE step, ONE small action, EVERY day, EVERY week, EVERY month, one year at a time is what individuals with dementia, Working groups of people with dementia, Advocacy organisations, and DAI are all trying to do. Together, we are so much stronger, and the collective voices of people living with a diagnosis of dementia have also become louder, and perhaps much more demanding than ever before.

The  conference in Japan was made inspirational by the sheer volume of people with dementia, and the energy and charisma of the members of the The Japan Dementia Working Group. Their friendship and hospitality was incredible, a was that of their supporters.  They are also wanting to join DAI, collaborate with us, and work on the global human rights, as well as human rights in Japan.

After the conference ended, DAI also went to Osaka, and Christine Bryden, James McKillop, and I, and others, were there as part of a panel discussing dementia, and being filmed to raise awareness in Japan. Christine gave a keynote speech of what she has seen in her 22 years of living with dementia, and the changes in Japan since her first visit there. Christine started the advocacy work in Japan, and people with dementia are definitely running with their own advocacy efforts now. It is incredible to see the ripple effect now of the work of so many people, started by a few long before many of us were diagnosed or knew anything about dementia.

DAI thanks the early advocates, as without them standing up and demanding a voice and a seat at the table, we would not be where we are today.

As I wrote on Facebook after the conference, one young woman from Indonesia who was at the ADI conference told mentioned to me and John Sandblom (and his wife Cindy, her first time to an ADI conference) that is was because of meeting and listening to us and our speeches last year in Budapest, that she has decided to set up a global group for YOUNG carers. WOW, how exciting is that! DAI is going to work with her, to support that effort. This has been a dream of many members at DAI who live with YOD, and have seen our children face with with us, with little or no support.

There is much more to report, especially on human rights, but also we will share many of the presentations given by people with dementia in Kyoto once we have had some time to format them, including the DAI workshop, as well as adding a photo collage of our time together.

THANK YOU TO THE PEOPLE OF  JAPAN FOR YOUR CORDIAL HOSPITALITY, YOUR FRIENDSHIP AND LOVE, AND FOR CARING AND SUPPORTING US ALL SO VERY GENEROUSLY. MANY OF US HAVE LEFT A PART OF OUR  HEART WITH YOU ALL.
Finally, a reminder to register for our next Webinar with Rhonda Nay, on Sex, Death and Dementia… this is one you will not want too miss.

 

DAI visits Taiwan Province of China

Last week, invited as the Chair and CEO of DAI, and in my role as the Ambassador for Alzheimer’s Disease International in South East Asia , I visited Taipai. The invitation to visit and support TADA was from LiYu Tang, who is the Secretary General of the Taiwan Alzheimer’s Disease Association (TADA) 湯麗玉  台灣失智症協會秘書長. This image was taken on the last day, at the end of the public meeting.

The staff of TADA, and the many others involved in planning this trip were incredibly generous and hospitable hosts, and looked after my BUB and I well, and especially ensured we ate well. The other very important part of this trip was the services of a translator, and on the first meeting, a university professor was able to translate for our meeting which was incredibly helpful, as instead of meeting with only one or two people, about 20 of the staff were also invited.

On the next two days, a beautiful young woman called Victoria Chang was engaged to translate for my sessions, and in one part of the public meeting, I completely forgot I needed her, and spoke for so long it was almost impossible for her to follow! It was incredible to have her support, and her ability to follow me, when I was unable to follow my own notes or slides, made it even more amazing.

The goal for my visit was not specifically to raise awareness of dementia, but partly to empower other people diagnosed with dementia to become advocates, and to work with Taiwan to inform government, policy and services. In the process of my many meetings, the seeds were sewn for the first Dementia Working Group.

People with dementia who attended the session at the Family of Wisdom house, a centre for people with dementia to attend and be involved in many different activities, spoke out for the first time publicly of their own experiences after the session there. The next day, in my final public meeting, a gentleman who had travelled from afar, also spoke up, and has also been invited to become a member of the Dementia Working Group. It is a very exciting time for people with dementia in Taiwan.

My other meetings were with a number of government or city officials, and the President of TADA, and the aim was to not only give them insight of dementia from the inside out, but to discuss ways in which they could change the experience of dementia for those diagnosed, and on ways to collaborate with each other towards a dementia friendly and dementia accessible and enabling Taiwan Provice of China.

My schedule was incredibly busy…

Day 1: Depart Adelaide 2pm on April 19, and arrive on April 20 at 11:30am (sleep – only on the flight as somehow we mixed up the schedule, and arrived a day later than expected!), and check into the YMCA hotel.
Meeting 12.30-1.30pm with Shwu-Feng Tsay Director-General, Department of Nursing and Health Care, Ministry of Health and Welfare, and about 20 of their staff.

Day 2: Pick up at 8am
Meeting 1: 9-10am – Chi-Hung Lin, Commissioner, Department of Health, New Taipei City Government, and a number of his staff.
Meeting 2: 11.30am-12.30pm – Li-Min Hsu, Commissioner, Department of Social Welfare, Taipei City Government, and a number of staff

Lunch

Meeting 3: 2-4pm – held at the Family of Wisdom, a relaxed afternoon tea and presentation to family, staff and people living with dementia. I was welcomed and thanked by Li-Yu Tang, the Secretary General of

TADA. My translator Victoria Change learned here how I can no longer follow my own notes, so it was excellent preparation for her for the public meeting!

Day 3: Pick up at 8.50am held at The Home of Christ
Press conference, 9.30-10.00am
Welcome and introduction by LiYu Tang
Presentation by Te-Jen Lai, President of TADA
Presentation by Kate Swaffer: Human rights of people with dementia
Presentation by Yu-Chin Wu, Legislator
Presentation by Hui-Jiuan Chien, Director General, Department of Social and Family Affairs Administration, Ministry of Health and Welfare
*********************************
Speech to the public, 10-11:30am with Facebook live broadcasting
Presentation by Kate Swaffer: Living Beyond Dementia
Question from the audience, Kate responds (with the support of Victoria, the incredible translator!)
Presentation by Zi-Long Ku, the Commissioner of Department of Social Welfare of Taoyuan City Government
Closing by Te-Jen Lai, President of TADA
Group photos

It was a very positive, but also very tiring few days, and I was honoured  and deeply humbled by these wonderful people, in particular this living with dementia who found the courage to speak out publicly for the first time. Thank you.

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

Ps. I have added a collage of photographs of the events below. Our next blog, will be about the ADI conference in Kyoto, and brining DAI to Japan!

So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

The global advocacy movement of people with dementia speaking out, and the many books, articles, and blogs or stories written by people with dementia globally certainly highlight this. Those of us who appear publicly as speakers or are involved in our communities in other ways and who appear to be ‘living well with dementia’ but who have also been formally  diagnosed with dementia, are often being accused of faking having dementia…

This has become systemic, and could easily be considered a form of bullying, and it must stop. Ignorance is no longer an excuse. One of DAI’s new board members Brian Le Blanc , has written two powerful blog posts about his own personal experience of this recently, and which we are sharing here today  as we lead up to the ADI Kyoto conference next week, as a reminder that whilst people are being diagnosed earlier in the disease process of dementia, it is completely logical they will not act or look as if they are in the late stages of the disease at the time of their diagnosis.

Part 1: So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

“Imagine my amazement when through recent conversations with some close acquaintances, I was told that there are individuals who think I am FAKING my Alzheimer’s Disease. Yeah, I know, right?

First off, HOW IN THE HELL DO YOU FAKE ALZHEIMER’S DISEASE???

  • I’ve had brain scans. Did I manipulate them by turning my brain off, not thinking anything while in the scanner?
  • I’ve been diagnosed, not once, not twice, not thrice, but 4 freakin’ times
    by a Neurologist, a Neuropsychiatrist, and two Neuropsychologists (appointed by the Social Security Administration, who by the way, declines benefits until no stone is unturned). Did I fake not remembering how to draw a clock or another type of shape?  Did I fake remembering the 4 words I was told 5 minutes ago?
  • Do I fake every day not remembering things from 1 minute, 1 hour or 1 day ago
  • I’ve had my driving privileges taken away by my Dr. for it was determined I no longer have the cognitive abilities or proper reaction time to operate a vehicle. Did I fake that too?”

Follow the link to read the full article by Brian Le Blanc, first published on his website on April 11, 2017.

Part II: So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

“PART II (hey, that rhymed with ado! It’s amazing what a person with Alzheimer’s can do!)

I will start with a quote from the Invisible Disabilities Association

‘In general, the term disability is often used to describe an ongoing physical challenge. This could be a bump in life that can be well managed or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else! Every person has a purpose, special uniqueness, and value, no matter what hurdles they may face.

In addition, just because a person has a disability, does not mean they are disabled. Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time but struggle to get through their day, with little or no energy for other things. Others are unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and/or need assistance with their care.'”

Follow the link to read part 2 of this topic, by Brian Le Blanc, first published on his website on April 14, 2017.

Finally, if you have not watched this DAI Master Class yet, please take the time to do so. You will learn a lot, and hopefully if you have ever accused someone of faking it, it will change your mind and heart.

Dementia and human rights, by Professor Peter Mittler

DAI’s Human Rights Ambassador Professor Peter Mittler CBE wrote a guest blog for Independent Living UK recently.

The following is a portion of this important article “Dementia and human rights”.

Dementia diagnosis often leads to exclusion

People with dementia have ‘lived independently and been included in the community’ all their lives, but they encounter deep-rooted and systemic obstacles that prevent them from continuing to do so following diagnosis.

Exclusion from the community frequently begins with the first disclosure of a diagnosis of dementia.

Kate Swaffer, Chair and CEO of DAI, uses the term “Prescribed Disengagement®” to characterise the advice that she received to “give up work, give up study, go home and live for the time you’ve got left”. Her husband was told he would soon have to give up work to care for her. Legal capacity and fitness to drive are immediately threatened by a diagnosis of dementia, rather than evaluated by independent assessment of functioning. This can be particularly traumatic for people with Younger Onset Dementia in mid-career and with responsibilities for young children and elderly parents.

Social isolation and stigma

Many people with dementia have described the loneliness and social isolation which they experience when friends and family members stop visiting and neighbours cross the street to avoid meeting them. Their isolation is increased by fear of failure and humiliation in going out.

Dementia has now replaced cancer as the illness most feared by the general public and is the reason why many people hesitate to seek help if they are worried about their memory or cognitive functioning. The stigma surrounding dementia is fuelled not only by the media but by politicians and professionals who refer to dementia as a ‘time bomb’ and commit to a ‘world without dementia’ within a generation.”

With is permission, we have highlighted it here; please go to their website to read it in full.

Announcing a new Chapter in DAI’s Human Rights work

Thank you Professor Peter Mittler CBE

As current Chair and CEO of Dementia Alliance International (DAI), I wish to announce that Professor Peter Mittler CBE has stepped aside from his role as Human Rights Advisor to our organisation, to take on an even more important role as the Human Rights Ambassador for both DAI and our strategic partners, Alzheimer’s Disease international (ADI).

We wish to thank Peter sincerely for his incredible passion, expertise and commitment to DAI and to all people living with dementia, in the work we have been doing for the human rights of everyone with dementia, including full access to the Convention of the Rights of Persons with Disabilities (CRPD) and other Conventions, since DAI placed human rights on the global stage in Geneva in March 2015 at the WHO First Ministerial Conference on Dementia.

Peter’s significant contribution to us has been outstanding, and his willingness to share his knowledge with all organisations globally cannot be highlighted enough. We are thrilled that he will continue to work with us in his Ambassador role. We have delayed publishing this post for it to arrive on April 1, 2017 in the UK, where Peter lives, and also to coincide with his birthday on Sunday. Happy birthday Peter.

We are all working together in our individual and collective quests for a human rights based approach for people with dementia. Working collaboratively, we are much stronger and far more likely to get results. Indeed, this is one of the keys to moving away from the rhetoric to reality. DAI’s book on human rights published in May last year, give a good overview of why they are important for all [The Human Rights of People Living with Dementia – from Rhetoric to Reality_2nd Edition_July 2016_English].

It has been since that time, that not only have people with dementia become more active in this work, but all Alzheimer’s advocacy organisations and many other individuals or organisations have taken up the baton. The fact that all ADI Council members agreed to this approach at the ADI2016 conference in Budapest last year is a testament to effective collaboration. Since that time, Alzheimer’s Canada has been very actively working towards achieving this.

DAI and ADI are also very lucky to have the support of Mrs. Diane Kingston OBE who takes over the role of DAI Human Rights adviser today.

Diane Kingston OBE (formerly Diane Mulligan) is a UK-based disability rights campaigner. She is Deputy Director of the International Advocacy and Alliances department at CBM, an international Christian development organisation committed to improving the quality of life of people with disabilities in poor communities. In 2012 she became the UK elected member of the Expert Committee for the UN Convention on the Rights of Persons with Disabilities (CRPD). Diane served as an UN Expert for a four-year term, including two years as an elected Vice-Chairperson. From 2007-2011, she was a member of the World Health Organization’s Advisory Board for Community-based Rehabilitation (CBR), and she was the lead author of that organisation’s CBR guidelines component on education. From 2006-2007, she served on the British Medical Association’s Patient Liaison Group and Equal Opportunities Committee, and had advisory input into two publications: Disability in the Medical Profession (2007) and Disability Equality within Healthcare: the role of healthcare professionals (2007). Diane has been supporting DAI’s work for two years.

Finally…

Dr Nicole Batsch is also supporting ADI and DAI in a consulting role when we are working on joint projects, and has almost 20 years experience developing ageing and dementia programmes across the US and the UK within mostly not-for-profit organisations. Her expertise encompasses many disciplines including developing a literacy programme for seniors, family carer interventions, a hospital-based senior wellness centre, dementia staff training for home care and care homes and initiatives for people with early stage dementia living in the community.  One programme, Powerful Tools for Caregivers Online, was internationally disseminated based on its research outcomes and won the 2006 Innovative Excellence award from the Alliance of Work Life Progress. From 2010-2012, Dr Batsch served on the board of directors for the American Society on Aging.  In addition, she co-authored the World Alzheimer Report 2012:  Overcoming the Stigma of Dementia and was the study author of a survey conducted with over 2000 people with dementia and carers in 54 countries.  The ADI report can be found at this link… 

We also have new DAI members taking on more of the global human rights work, and we are excited to be able to announce and once again introduce Phyllis Fehr to you. She is a person living with a dementia in Canada, and who has agreed to take on more of the global on human rights work more actively with DAI, on top of her role with ODAG.

Mrs. Phyllis Fehr, a new DAI board member and Vice Chair of the Ontario Dementia Advisory Group who has been actively working on human rights work in Canada, now joins DAI and ADI on the international stage working alongside myself and other DAI members or consultants on the global stage. It is imperative that we pass the baton to more people with dementia, and we are thrilled that Phyllis has joined us globally with this work.

Phyllis was given a working diagnosis of younger-onset Alzheimer’s and Lewy Body dementia when she was 53. At the time she was working full time in the intensive care unit as a registered nurse. Phyllis promotes the abilities of people living with dementia by advocating for people living with this disease both locally and nationally, and now internationally.  She advocates change for persons with dementia as an Ontario Dementia Advisory board co-chair with a focus on government policy.

Phyllis recently represented DAI at the United Nations in Geneva on March 20th, together with Dr Nicole Batsch who attended representing ADI, at the first Open Session of the new CRPD Committee. Representatives from civil society and organisations of disabled persons were asked to speak about their priorities for the work of the Committee for the next eight years in the wider context of the UN 2030 Sustainable Development Goals (Action 2030). You can read her full speech in a previous blog here…

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

Phyllis Fehr represents DAI at the 17th Session of the CRPD Committee

Mrs Phyllis Fehr, Board Member of the Dementia Alliance International (DAI) and Vice Chair of the Ontario Dementia Advisory Group (ODAG) presents in Geneva at the 17th Session of the CRPD Committee, March 20th, 2017.

On March 17 2015,  Kate Swaffer, co-founder and then co-chair of Dementia Alliance International placed human rights for all people with dementia on the global stage at the World Health Organisation First Ministerial Conference on Dementia in Geneva. Just over two years later, there have been many people with dementia working tirelessly globally to further this cause, in their local or regional communities, or at the national or global level. After this event, Professor Peter Mittler became DAI’s Human Right Advisor and we and others living with dementia have been attending events and meetings in Geneva or New York many times now since that landmark day.

It is a very liberating time for all people with dementia as together we collectively pursue our human rights, and DAI is proud that Phyllis is representing us all in Geneva today. We have no doubt the Ontario Dementia Advisory Group (ODAG) are even more excited and very proud to have Phyllis Fehr there today, (Phyllis is ODAG Vice-Chair), as we collaboratively work together to ensure human rights are achieved for all, including people with dementia.

Here is the link if you wish to follow the event. Phyllis will give her 2 minute speech today, Monday, March 20th at the WHO in Geneva. http://www.unog.ch/unog/website/news_media.nsf/(httpNewsByYear_en)/427AC09275A960C4C12580E5003A283D?OpenDocument

Phyllis is there with Nicole Batsch who is representing Alzheimer’s Disease International, and whom are DAI’s strategic partners and with whom we work in close but autonomous partnership.
WE WISH THEM BOTH WELL IN THEIR INDIVIDUAL AND SHARED ROLES TOWARDS ENSURING THE HUMAN RIGHTS AND ACCESS TO THE CRPD IS AFFORDED TO EVERYONE.
You can read Phyllis’s full speech notes here:

PRESENTATION BY PHYLLIS FEHR, Board Member of Dementia Alliance International (DAI) at the 17th Session of the CRPD Committee, March 20th 2017

I am pleased to be here today on behalf of Dementia Alliance International, and also as Board Member of the Ontario Dementia Advisory Group.

Dementia Alliance International is a global organization run by and for people with dementia.

It’s an exciting time to be involved in the global movement to gain human rights for people with cognitive impairments.

Framing dementia as a disability is still very new, but it is being discussed as a policy direction and human rights issue.

When it comes to the United Nations Convention on the Rights of Persons with Disabilities, our goal is simply to ensure that people with cognitive impairments are treated like people with other disabilities.

Dementia Alliance International has been working to inform that debate and influence its direction.

We are making progress.

The World Health Authority, in its proposed Global Action Plan for a Public Health Approach to Dementia, has placed the human rights of people with dementia; empowerment and accountability as three of its seven cross-cutting principles. These reflect the core elements of CRPD and all other Human Rights Treaties deriving from the UN Universal Declaration of Human Rights in 1948.  

Not only is progress being made at the global level, but also in my home country of Canada.

For the first time in Canadian history, a group of people with dementia, The Ontario Dementia Advisory group and our national Alzheimer’s organization have joined with a coalition of disability groups to speak with a common voice for the inclusion of people living with dementia in the implementation and monitoring of the CRPD.

This approach to human rights and the CRPD reflects the model being used at a global level by Dementia Alliance International and Alzheimer’s Disease International.

The Board of the Ontario Dementia Advisory Group, all of whom are DAI members, included access to CRPD as one of their recommendations in testimony before a committee of the Canadian Senate.

“The CRPD is important as it helps to spell out practical steps to ensure persons with dementia enjoy human rights on an equal basis with others.”

I am often asked how the CRPD will apply to the human rights of people dementia.

Let me give you an example – a medical diagnosis of dementia frequently results in the automatic loss of a driver’s license.

Is it not our fundamental right to have our ability to drive evaluated by an independent assessment of functioning?

That’s why people with dementia need full access to the CRPD.

The issue of human rights has been an interesting journey so far.

We still have lots of work to do.

People living with dementia are included in the broad definition of disability in Article 1 of the Convention, but have not been included in its implementation.

We need a seat at the table.

We also have to improve knowledge about why human rights are important to people with dementia and why they need to fight for their rights.

People with dementia need to think of the Convention on the Rights of Persons with Disabilities as a tool to enable them to access fundamental human rights to which they are currently excluded.

I am looking forward with great anticipation to this 17th session of the CRPD and the committee’s consideration of the initial reports submitted by Canada and other countries.

Dementia Alliance International welcomes the election of Robert Martin, a person with an intellectual disability as a member of the CRPD Committee.

Over the next 8 years, if not sooner, we would like to see a person with cognitive impairments* caused by dementia elected to the Committee”. 

Thank you for your attention.

Phyllis Fehr

* Please note, people with varying types of cognitive and other disabilities prefer the term ‘cognitive disabilities’

The briefing note about the event is attached below:

International Women’s Day 2017

Celebrating all women on International Women’s Day and all of the wonderful men who might support us! Of course, many women with dementia live alone, or have another woman supporting them; we celebrate you all. We also acknowledge the impact of dementia on men and sons, but know from the reports and data, that dementia impacts far more women than men globally, either as care partners or as women who are diagnosed with dementia.

There are many reports you can read about this, including the newsletter DAI sent out recently if you are on our mailing list. In case you are not subscribed, I have added the information in our e-News below.

Women are much more likely to be affected by dementia than men. The majority of people living with the disease and those most at risk of developing dementia are women, and women account for an overwhelming majority of care partners and health professionals;

Women make up the majority of care partners-  two thirds in higher income countries, and many more in low and middle income countries;

There is not enough research on dementia and women. There is a need for more research with women as participants and gender dynamics of the disease;

Due to pressure of other activities – Professional, Mother, Care partner, Homemaker – Women have less time and are less likely to see health providers early;

By 2050, 68% of the 131.5 million people with dementia will live in low and middle income countries. In these countries, the primary care partner is much more likely to be female.

Last week, an event was hosted in London by GADAA, “Women and dementia: A Global Challenge”.  The recording of the event will be available to view soon. Kate Swaffer, DAI’s Chair, CEO and Co-founder was one of the women presenting, and you can read her speech notes here…

GADAA’s full report Women and Dementia: A Global Challenge can be downloaded here, and ADI’s report on Women and Dementia: A Global Research Review can be downloaded here.

Key facts

  • Dementia is listed by the World Health Organisation in the top ten causes of death for women worldwide and is now the biggest cause of death for women in the UK.
  • Throughout the world, women experience higher dementia prevalence rates than men and face gender-specific barriers to living well with the condition.
  • Women provide the vast majority of both unpaid and formal care to people living with dementia, with around two thirds of primary caregivers around the globe being women, rising to more than 70% in lower and middle income countries.
  • The stigma surrounding dementia exists universally and extreme forms of discrimination can lead to the abuse of women. Older women affected by conditions such as dementia are exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition.
  • A recent UK study identified that women living with dementia are more likely than men to be prescribed psychotropic medication that can negatively affect their physical health.
  • In the US, 20% of female care partners have gone from working full-time to part-time, compared with only 3% of working male caregivers. 19% of working women care partners had to leave work to provide dementia care in the US.
  • Yet of the 29 countries in the world with a national plan to tackle the disease, only 12 offer gender-sensitive responses. There is also no systematic data collection to disaggregate the prevalence, diagnosis rates or impact of dementia on women.

The Global Alzheimer’s & Dementia Action Alliance (GADAA) aims to connect a broad spectrum of wider international civil society organisations (iNGOs) including international development organisations, health-focused NGOs, disability rights champions, older people’s networks, human rights organisations, faith based groups and women’s organisations. Through the GADAA network we aim to champion global action on dementia and to support iNGOs in responding to the global challenge. DAI is a member of the GADAA Steering Committee.