DEMENTIA ‘It’s the secret we tried to hide’

• Published date: 08 March 2021
• Date: 08 March 2021

My colleague Mike Scott’s father, Bob, died of dementia.

Last year, we were on the phone, talking work stuff. I mentioned my mum, he told me about his dad. Together we decided to start a conversation about this cruel, heart-breaking, deadly disease that doesn’t care who you are, who you were or what you might have become.

“It was like an almost unconscious knowledge that dementia needs to be talked about and it hasn’t been,” Mike said. He remembered one boss asking us: “Do you really think this is interesting?”

Interesting? Important?

“How important has this turned out to be?” asked Mike.

“It’s going to be the biggest killer in this country.”

Lisa Burns, national spokesperson for Dementia New Zealand, calls the disease a “growing silent epidemic”.

Her grandmother died from dementia and she says four out of five Kiwis have a connection to it.

“I think it is difficult for people to talk about dementia because of the fear and stigma.

“As our population ages, the numbers will rise from 70,000 to 170,000, and it’s going to cost the economy $4.6 billion. It’s a terminal illness that can last up to eight-10 years and there is no cure for it.

“Dementia is the leading cause of death in the United Kingdom and for females in Australia. Someone is developing dementia every three seconds,” Burns said.

Mike is a video journalist. I have a background in television but moved to print media 14 years ago. Together we have worked on many stories. He’s the one behind the camera capturing beautiful images, while I interview and report. As journalists we expect our interview subjects to give of themselves — to be open, honest and transparent.

I’d describe Mike as calm, considered, and private. He’s controlled. Yet he agreed to allow the filming of an MRI scan to see if he was predisposed to dementia — the disease that claimed his father, the man with whom he had a fraught relationship.

“Sharing my personal story has not been comfortable,” said Mike. “Being in front of the camera has been really tough. Talking about your upbringing and personal information is confronting and makes me uncomfortable and the fact dementia is a part of our family.

“As my sister said, ‘it’s the shameful secret we tried to hide’.”

It’s impossible to truly understand what it’s like to live with dementia but, at Summerset Karaka, we were offered the opportunity to participate in a simulation test designed to create confusion.

We had to complete simple tasks wearing goggles that distorted our vision...