Dementia Declaration strengthens voice of people living with dementia mate wareware

I am still me.

These words embody the Dementia Declaration, He Whakapuaki mō te mate Wareware that was launched by the Alzheimers NZ Lived Experience Advisory Group (LEAG) in 2019.

LEAG member Alister Roberston is a stalwart of the sector. He was awarded Life Membership a few years ago and currently sits on the Alzheimers NZ Board.

This is alongside other roles including the Dementia Mate Wareware Leadership and Advisory Group and, until recently, Chair of Dementia Alliance International.

He says the launch of the declaration is one of the most significant achievements of the group so far.

“It’s a document saying what things we would like to be in place, and somehow, we managed to narrow it right down to one page. It’s quite succinct and what we want.”

Four months in the making, the declaration sets out what people living with dementia mate wareware need to live their best possible lives and underpins the work of Alzheimers NZ – which was formed in 1986.

The LEAG itself marked 10 years of existence in 2024.

“It is the opportunity to hear from people what their experience is. And probably one of the biggest things with dementia is that everyone’s experience is different,” says Alister.

“And I’m quite happy to put my hand up and say ‘yes, I’m happy to represent some of the people living with dementia.

“It just adds to the strength of Alzheimers New Zealand, and especially, with our advocacy work and getting in front of politicians.”

The terms of reference were updated in 2023 to reflect the diversity of the group with one of the members to be Chair – Fiona Parrant has held the role since then.

Among other initiatives, the group has since played a significant role in research into the lived experience of New Zealanders living by dementia mate wareware.

Two separate reports highlight the stigma they face, the problems they experience getting a diagnosis and the negative impact of the inequitable access to support services.

And Alister continues to make sure the lived experience voice is strong on the Alzheimers NZ Board.

While this is now embedded in the way the Alzheimers NZ Board works, it was revolutionary when the first person living with dementia ware ware, Kate Clark, was appointed in 2006.

The importance is recognised in the latest Alzheimers NZ strategy under the organisation’s commitment to amplify the lived experience voice, and the group has no plans to slow down.

And Alister’s hopes and dreams for the future?

“It’d be great to see the Dementia Action Plan adopted because we certainly know at the moment it seems to be a big issue to get any funding for dementia,” he says.

“The other big one would be that the services that are provided by Alzheimers NZ and Dementia NZ are provided with adequate funding, so they can provide those services to more people living with dementia.

“Our lives do matter. We want to be treated with respect and acceptance, just like anyone else.”

Caption: Members of the Lived Experience Advisory Group at the launch of the Dementia Declaration in 2019 including Alister Roberston