Nelson Mandela once said that, “To deny people their human rights is to challenge their very humanity.” We think that denying people living with dementia and care partners their rights is something we, in turn, should all be challenging.
What do we mean by a rights-based approach?
“Our lives do matter, and it is time for us to be heard.”
This is the rallying cry of the Dementia Declaration, He Whakapuaki mō te mate Wareware, which has been written by New Zealanders affected by dementia.
Human rights are the basic rights and freedoms that every person in the world should have. Often, when human rights are being respected, they’re almost invisible to us. We take them for granted specifically because they feel natural, fair and right. It’s often only when they are being violated that we notice their absence.
By 2050, there is expected to be around three times the number of people living with dementia in New Zealand than today. As this number grows, so too will the imperative for all of us to make sure the rights of people living with dementia are no longer being overlooked or ignored.
Our research into the lived experience of dementia told us that people want to see a change in the way society views and treats people living with dementia.
“The one thing that I would really emphasise is that whilst the diagnosis is traumatic, we believe quite generally, you can go on and live a meaningful life with some changes.”
We believe these changes need to start with a more human rights-based approach to how we do things – starting with the moment a person receives a diagnosis of dementia.
Where are we now?
Adopted in 2006, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) focuses on making sure persons with disabilities are active members of society who enjoy all human rights and fundamental freedoms.
As part of the Convention, people with dementia are entitled to the “enjoyment of the highest attainable standard of health”. At the moment, we are nowhere near this, not helped by the fact that there is no nationally agreed action plan to address dementia and that there has also been no extra support provided to care in the community for a decade.
Disappointingly, this experience is the most common one faced by people living with dementia: “You get told about your diagnosis and then advised to go and get your ‘affairs’ in order. Everything becomes slanted to the negative. It’s as if you no longer have anything to look forward to.”
What would a rights-based approach look like?
It’s all quite straight forward really – it’s an approach where people living with dementia are treated with respect, supported to make decisions that are important to them, and where they receive the care and support they need to live with dignity.
It’s receiving at least 12 months post-diagnosis support from services located close to where people live, with flexible and accessible respite available so people can get a break. It’s having access to the things people need to live well such as housing, privacy, an adequate standard of living, and ways of getting where they need to go.
It’s a place where every single person who is living with dementia in New Zealand can stand up and say, “I certainly know what road I’m travelling down. I’m not at the end of it yet.”