Tag Archives: Kate Swaffer

DAI attends mhGAP Forum 2017

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

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

Implementing the Global Dementia Action Plan into policy

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

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

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

  • In spite of often receiving earlier diagnoses, we are still being Prescribed Disengagement¬ģ, i.e.¬†being told to go home and die via aged care, as if there is ‚Äėnothing that can be done‚Äô
  • We are not provided with rehabilitation or other re-abling post diagnostic support
  • We are not being provided with the same disAbility assessment and support as every other person with an acquired disAbility receives
  • These points are all relevant to national dementia plans

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

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

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

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

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

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

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

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

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

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

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

DAI’s Next Steps:

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

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

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

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

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

Thank you.”

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

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 Рfrom 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‚Äôs 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‚Äôs 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

Kate Swaffer presents at ADI2015

Dementia Awareness Week UK Day 3

For Day 3 of¬†Dementia Awareness Week UK, we are previewing Kate Swaffer’s recent keynote presentation, Dementia Friendly Communities? at ADI2015 in Perth. She talks about what dementia friendly means to people with dementia, highlighting some of the missing pieces of the puzzle in the Dementia Friendly Communities work being done around the world. Thanks Kate, and thanks also to Dr Shibley¬†Rahman for recording it, and giving us permission to share it.

Whilst there are no speech notes to add here, the power point slides are available here ADI2015_DementiaFriendlyCommunities_Swaffer_Keynote_FINALbut the key messages are listed below.

  1. Treat us as equal partners
  2. Include us in every conversation about us; nothing about us without us
  3. People with dementia must be at the centre of the work being done towards dementia friendly communities, in the same way people with disAbilities would be included
  4. Being dementia friendly¬†is not so much about being ‘friendly’, but about full inclusion, respect and accessibility to our community