“You don’t look like you have Alzheimer’s or dementia” is something New Year Honours recipient Alister Robertson has heard plenty of times before.

And it’s a stigma he’s hoping to change, as he spends his days fighting to give a voice to those who often suffer in silence.

Robertson has been awarded a Queen’s Service Medal for services to people with dementia.

Nine years after Robertson was diagnosed with young-onset Alzheimers at the age of 60, he’s taken his own experiences and those of his father before him to make sure people have access to the right care and support while also quashing misconceptions about the degenerative diseases.

“Nothing was being done. Unless people with these conditions actually got up and started talking about it, to a certain extent, nothing was happening.

“Even within the health sector, there is stigma. Some of the GPs will ignore signs without really listening to what is going on.”

When you look at his credentials, Robertson has probably achieved what many could never in their whole life.

He has been a member of the Alzheimer’s New Zealand Lived Experience Advisory Group since 2017 and is currently chairman of Dementia Alliance International (DAI).

Having lived in Hawke’s Bay for more than a decade, he also still plays a vital role with Dementia Hawke’s Bay, running online tutorials and support groups, gym sessions and speaking engagements.

“I was fortunate to be diagnosed in Hawke’s Bay because, at that time, the services that were available were some of the best in New Zealand,” he said.

“What I’ve seen over time, unfortunately, is that the level of funding didn’t keep up with the demand.”

One thing Robertson is most proud of, and hopes will make the most difference, is his role in the development and release of the Dementia Declaration, a statement of what living well with dementia looks like.

“We may not have seen much change, but the hope is that we’ve helped stop things getting worse,” he said of his advocacy.

On top of this, he’s also working with the wider dementia sector to develop the first New Zealand Dementia Plan so more support networks can be activated and funded in the future.

A sit-down with new Health Minister Shane Reti is something Robertson hopes to achieve in the New Year so he can discuss the plan and action that needs to be taken.

Humble as ever, Robertson said he was “shocked” at his New Year’s honour, considering he felt he was “on a scale down there and all the others were up there.”

“It’s not something I’d ever really contemplated would happen.”

This article was written by Mitchell Hageman for Hawke’s Bay Today.