"You are still the same person the day after the diagnosis as the day before."
That's the message from Napier man Alister Robertson about living with dementia. It's also one of the key messages behind Alzheimer's New Zealand's Dementia Friends initiative.
In New Zealand about 62,000 people live with dementia, a group of diseases including Alzheimer's disease, and that number is expected to almost triple by 2050 to hit 170,000, in large part because of the country's ageing population.
Already 80 per cent of Kiwis know or have known someone living with dementia, according to a survey carried out by Alzheimer's New Zealand. That's up from almost 67 per cent in 2014.
Chief executive Catherine Hall said the increase in people who knew someone with dementia was partly because of more openness about the diseases although the increase in numbers may be playing a part.
Robertson, one of the faces of the Dementia Friends campaign, wants to see even more people educated about the disease so they know how to act around and help those living with dementia.
The 63-year-old was diagnosed with the early stages of dementia about four years ago after he noticed he was having trouble with aspects of running the garden centre and café he owned.
"I was looking at the little bits of it but wasn't able to stand back and see that the whole thing wasn't actually going right."
While his father had Alzheimer's, it still took Robertson and his family time to come to grips with the diagnosis. Some friends also struggled to know how to deal with it.
"Everyone that's been diagnosed will recognise that as far as your friends go, there are some friends you never hear from again," he said.
"People don't really have a good understanding. They think it's about forgetting things but that's only a part of it."
For Robertson, the disease means he now has to consciously think through the processes and steps needed to carry out activities.
"Because of that it takes longer. Then you double check – have you done everything in the way you should have."
He can no longer drive and it is starting to affect his ability to write legibly.
Those struggles are where Dementia Friends comes in.
The initiative was launched in April and allows people to go through a short online tutorial which explains what dementia is and how you can best help those who have it. It then encourages you to put that into action.
Hall said the aim was to help people remain connected to people they know who were diagnosed with a form of dementia.
"The stigma and isolation is one of the most devastating things for people diagnosed," she said.
"When things get tough you need them even more and that is when people often take a step back because they don't know how to react to it."
The programme encouraged people to do small things to help like have a cup of tea or go for a walk with someone who had dementia and already more than 1200 people had signed up, Hall said.
Robertson said help with the practical things which were now a challenge was another way. He recently completed the K2 cycle challenge but needed help with some of the planning required to train for and complete the race.
Alzheimer's New Zealand is being supported by Countdown through sales of lamingtons for the next month. For every pack sold, 20 cents will be donated to the charity.
10 warning signs of dementia
• Recent memory loss that affects daily life
• Difficulty performing regular tasks
• Problems with language
• Disorientation of time and place
• Decreased or poor judgment
• Problems with complex tasks
• Misplacing things
• Changes in mood and behaviour
• Changes in relating to others
• Loss of initiative