New Zealanders living with dementia say services are woefully inadequate and they're calling for better support.
A new report out on Friday tells the stories of those who have the disease and the people who care for them.
It was a shocking diagnosis to come to terms with when, five years ago, aged just 60, Alister Robertson was told he had dementia.
"My wife was the one who recognised a few things were a bit different to normal," Alister Robertson, Alzheimer's NZ spokesperson, says.
He says he lost friends, his ability to earn an income, and his independence.
"You're getting a double whammy, you get a diagnosis of dementia, and then advised that you're no longer able to drive, your spouse now becomes your care partner," Robertson says.
His father had dementia, and while he believes services have improved over the past 15 years he says there's much work to be done.
Around 70,000 in New Zealand have dementia and it's projected to rise to 170,000 over the next 30 years due to our ageing population.
The new report tells the stories of 49 New Zealanders living with dementia and Alzheimers NZ says it shows a desperate need for better support.
"It is possible to live well with dementia here in New Zealand but it isn't easy to do so at all and that's because the stigma can get in the way but it's also because the services are woefully inadequate," Catherine Hall, Alzheimers NZ CEO, says.
We all have the risk of developing it, so what can we do to avoid it.
"Use it or lose it, if you lose your cognitive capacity you lose your condition and things start to decline, after that it's really, what's good for your heart is good for your head," Geriatrician researcher Dr Phil Wood of Auckland University says.
That means getting exercise, eating a healthy mediterranean diet, keeping your mind active and socialising.
If you are concerned there are some practical things to do early on. See your GP for a diagnosis to confirm it is dementia, make a will and set up an enduring power of attorney.
For Alister Robertson, he says he wants people to educate themselves about the brain disease, to get rid of the stigma.
"I would still like to be treated the same, nothing's changed, I'm still me and our lives do matter," he says.
That means being valued and respected for what people with dementia can do, not what they can't.