There are currently more than 47.5 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.
Please note: this publication has been updated to incorporate corrections made on 19 June 2016.
Please re print for the updated version.
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 edited publication here: The Human Rights of People Living with Dementia – from 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:
[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
[iv] Alzheimer’s Australia (2016) Key Statistics, https://fightdementia.org.au/about-dementia/statistics
Harnessing the United Nations Convention on the Rights of Persons with Disabilities to improve the lives of persons with dementia
Prior to releasing the HR publication above, this Disability Rights for persons with dementia_DAI-ADI position paper “Harnessing the United Nations Convention on the Rights of Persons with Disabilities to improve the lives of persons with dementia”, was initiated by DAI, and commissioned jointly by DAI and ADI on the Human Rights, and the Disability Rights of people with dementia.
Professor Peter Mittler in this position as DAI’s Human Rights Advisor gave a keynote presentation at the ADI2016 conference in Budapest, that will become the turning point for our work, as his brilliant intellectual rigour on this topic, and his ability to express it in language that everyone could not only understand, but could see why we need to use the legislation already in place for people living with disabilities, including people with dementia. We thank him for his expertise and commitment to DAI and the rights of all people with dementia.
You can read Professor Mittler’s speech notes here:
NOTES FOR DAI POWERPOINT SLIDES ON UN CONVENTION ON RIGHTS OF PERSONS WITH DISABILITIES (CRPD)
2 These statements were derived from independent market research. Countries developing new dementia strategies are required to sign the Global Dementia Charter. Many of these reflect specific CRPD Articles to which 162 countries and the EU are already committed in international law by ratification of this Treaty: i.e. they are statements of human rights which have already been established in international law.
4 In the light of the commitment of the ADI Council to a human rights policy, the first question is now the most important for each regional and national Alzheimer Associations. IDA has asked DAI to make suggestions.
e.g.: Alzheimer Europe has a European Working Group of People with Dementia, whose Chair is a Board Member; Alzheimer Scotland has a Scottish Working Group of people with dementia that works closely with the Scottish government – the only government that uses CRPD as a basis for policy for all persons with disabilities, including those with dementia. Similar partnerships are developing in many other countries.
DAI believes that persons with dementia should be supported to be part of the decision making process of every Alzheimers Society on all matters of direct relevance to them. Nothing About Us Without Us.
6 DAI works in partnership with ADI but is autonomous. As an international self-advocacy group recognised by the UN, DAI has already used its right to make direct contact with UN organisations and will continue to do so. Independent advice – eg on submitting parallel reports is also available from National Human Rights Organisations whose remit includes disability and who are independent of government. DAI can advise on Toolkits and Guidelines on using CRPD. Basic UN website.
7 Most countries have a National Human Rights Agency for people affected by all UN Human Rights Conventions, as well as CRPD. They are independent of government and can provide expert advice on the preparation of a parallel report. There are also several toolkits and training materials. DAI can make this information available.
8 These General Principles are reflected in the 34 CRPD Articles. Articles 25 (Health); 26 (Rehabilitation) and 19 (Living Independently and Being Included in the Community) are shown below but each Article is important in reflecting the fundamental General Principles. These are not just fine words: they are fundamental in the work of the CRPD Committee with governments and civil society.
9 DAI has submitted a paper to the UN on this Article – see Dementia Alliance International in http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CallDGDtoliveindependently.aspx . This link also provides access to submissions by many other international, national and civil society groups – including people with intellectual disabilities and mental health issues, as well as those with autism who have not so far used CRPD. It is worth reading some of these submissions because they reflect how much we all have in common.
11 DAI is asking for a Rehabilitation Pathway which begins with diagnosis and includes a trained support worker who can link to key services & supports to the CARE COUPLE: eg adaptations to home; (OT) check on side-effects of medications (GP/specialist nurse) need for specialist investigations or interventions (eg psychosocial); check on limitations in social participation, isolation from friends, extended family, community activities (clubs, pubs, church etc); contact with GP; link to dementia-friendly communities. See DAI submission to UN for more information; also reference to pilot work along these lines in Queensland.
12 Kate Swaffer: Rehab pathway comparable to that available to people who sustain severe brain damage as a result of stroke, road traffic accidents or severe brain infections-eg meningitis, encephalitis.
13 ADI AND DAI ARE SEEKING ASSURANCE FROM WHO THAT PEOPLE LIVING WITH DEMENTIA ARE FULLY INCLUDED IN WHO’S DISABILITY POLICIES AND IN ITS ADVICE TO GOVERNMENTS.
WE ARE SERIOUSLY CONCERNED THAT THE DEMENTIA STRATEGIES NOW BEING LAUNCHED ACROSS EUROPE, THE PAN-AMERICAN HEALTH ORGANISATION AND IN MANY COUNTRIES DO NOT USE CRPD AS A BASIS FOR POLICY, EVEN THOUGH THEY MAY REFER TO THEM IN PASSING OR TALK IN GENERAL TERMS ABOUT HUMAN RIGHTS. THIS IS WHERE ORGANISATIONS OF AND FOR PEOPLE LIVING WITH DEMENTIA NEED TO BE VIGILANT AND PROACTIVE BECAUSE NEARLY ALL THE COUNTRIES INVOLVED HAVE RATIFIED CRPD.
ALTHOUGH WHO AS AN ORGANISATION FULLY REFLECTS CRPD IN ITS POLICIES, IT IS NOT CLEAR WHETHER PEOPLE WITH DEMENTIA ARE INCLUDED.
ADI AND DAI ARE RAISING THIS ISSUE WITH WHO BUT PRESSURE NEEDS TO COME FROM ALL OF US CONCERNED WITH THE NEEDS AND RIGHTS OF PERSONS WITH DEMENTIA.
15 Community Based Rehab is highly relevant to the inclusion of people with dementia in the UN 2016-2030 Sustainable Development Goals, especially in Low and Middle Income countries.
So far, CBR has been a great success with children and adults with other disabilities but it now needs to be extended to people with dementia to whom it can help them to continue to be included in their communities.
IDA and DAI are raising this issue but advocacy with the regional offices of the UN can be more effective: especially Asia Pacific. We have contacts with these regional offices who are sometimes more forward looking than their international Head Office.
16 This slide show that CBR works at community level – i.e health, education, livelihood, participation in society and above all EMPOWERMENT and Disabled Persons Organisations.
18 We are open to suggestions, advice- and above all support- from all organisations and groupings OF and FOR people with dementia.
We’re All in This Together.
Peter Mittler, 27-04-2016