Tag Archives: The human rights of people living with dementia: from Rhetoric to Reality

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

DAI Media Release

The human rights of people living with dementia: from Rhetoric to Reality

Dementia Alliance International is proud to be launching its first official publication to coincide with the adoption by Alzheimer’s Disease International of a Human Right based approach, and to coincide with Dementia Awareness Week UK 2016. With input from our Human Rights Advisor Professor Peter Mittler, and other experts, we hope this guide will educate and support the activities of individuals and organisations, and will be the beginning of real change.  We have had much rhetoric and agreement that we have human rights; now we want real action.

Media Release:

There are currently more than 47 million people with dementia globally and one new diagnosis every 3.2 seconds[i]. There are 850,000 people in the UK who have a form of dementia[ii], more than 5 million[iii] in America, and more than 353,800[iv] Australians with dementia in Australia.  If dementia were a country, it would be the 18th largest economy.

Dementia Alliance International (DAI) is an advocacy group, the peak body and global voice of people with dementia. Our mission includes Human Rights based approaches that are applied to the pre and post-diagnostic experiences of people with a dementia, in every way. We advocate for a more ethical pathway of support that includes our human right to full rehabilitation and full inclusion in civil society; “nothing about us, without us.”

“We are launching this landmark Dementia Alliance International guide because, as a direct result of DAI’s advocacy and a rights-based approach including access to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has just been adopted by Alzheimer’s Disease International. This is a watershed moment for people with dementia across the world.”  Kate Swaffer

The human rights of people with dementia lie at the heart of our work. Access to the UN Disability Convention was one of the demands made by DAI’s Chair, Kate Swaffer at the World Health Organisation’s First Ministerial Conference on Dementia held in Geneva in March 2015. Since then, we have done everything we can to make a reality of that demand.

“What matters to us now is that people living with dementia should be empowered to use their undisputed right of access to this and to other relevant UN Human Rights Conventions, including a future Convention on the Rights of Older Persons.” Professor Peter Mittler

You can download a copy of our publication here: Human Rights for People Living with Dementia – Rhetoric to Reality

You can view a video of Kate Swaffer and Peter Mittler introducing the need for a human rights based approach to dementia at the recent ADI Conference in Budapest here:

Membership of DAI is exclusive to people with a medically confirmed diagnosis of dementia; to join our exclusive club or to join a support group, visit us here www.joindai.org.

Contact details

Contact Kate Swaffer for more information or read more about the work of Dementia Alliance International here.

Follow us on @DementiaAlliance

Kate Swaffer, Chair, CEO, Co-founder of Dementia Alliance International and author of What the hell happened to my brain?: Living beyond dementia, published on January 21, 2016.

References

[i] World Health Organisation, Dementia Statistics (2015) http://www.who.int/mediacentre/news/releases/2015/action-on-dementia/en/

[ii] Alzheimer’s Association, (2016). 2016 Alzheimer’s Disease Facts and Figures. http://www.alz.org/facts/overview.asp

[iii] Alzheimer’s Society UK (2014). Dementia 2014 report statistics, https://www.alzheimers.org.uk/statistics

[iv] Alzheimer’s Australia (2016) Key Statistics, https://fightdementia.org.au/about-dementia/statistics