Aug 18, 2017

Human Rights-based approach for people with dementia, by people with dementia

The human rights of people with dementia lie at the heart of our work.

There are currently more than 47 million people with dementia globally and one new diagnosis every 3.2 seconds. In Australia there are more than 353,800 Australians living with dementia, and if dementia were a country, it would be the 18th largest economy.

Dementia Alliance International 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 launched a landmark Dementia Alliance International guide because, as a direct result of DAI’s advocacy, a rights-based approach (including access to the United Nations Convention on the Rights of Persons with Disabilities) has just been adopted by Alzheimer’s Disease International.

This is a watershed moment for people with dementia across the world. We launched our publication to coincide with Dementia Awareness Week UK 2016.

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 I made 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.

In the words of DAI member Peter Mittler, “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.”

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  1. It would be great to understand what this actually translates to for daily living. Not only for those with the disease but those who are battling the aged systems and beurocratic policies and processes in order to meet with their loved one’s wishes. There is so much that works against them and even supported decision making can be used as a means of coercion and influence intentional or not.
    There are hundreds of examples that makes that a true statement yet it isn’t being recognized and there is a level of blind faith in Industry that is not afforded to direct family who know the person intimately yet they are not even included by industry.
    I recall OPAN stating that if a resident was a type 1 diabetic with Alzheimer’s and they indicated they wanted a piece of chocolate cake for another residents birthday then it’s their dignity of risk and should not be denied! How is that in the best interest of the individual.
    There is a fine line here that I feel is being crossed and ignored. It need to be recognized before people start dying and the SIRS report on unexpected deaths starts escalating rapidly.

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