It touches two in three, there's no cure and only 60 per cent of cases are diagnosed. We take a look at what it does to our way of life and what's being done to snuff out health's ticking time bomb.
Jim Phillips' biggest worry is forgetting who his children are.
For decades he juggled his building business, with his passion for the theatre. He tended to the rose gardens at home and cooked the evening meals.
Now his wife Bev has to stand guard at the sink. Jim can't remember how to peel a potato.
While that is a big number, it is estimated only 60 per cent of cases are diagnosed and the financial costs are huge. In 2016 dementia cost New Zealand $1.7 billion, a bill which is expected to blow out to more than $4.6 billion by 2050.
Dementia, of which Alzheimer's Disease is the most common form, is health's ticking time bomb.
Already, two out of three Kiwis are touched by the disease in some way. And with the aging population the situation is only going to get worse.
Death certificates under-report dementia as the cause of death, so it is very difficult to know how many people die of the disease in New Zealand. And it is fatal.
But it's difficult to find evidence of political will to do anything to address this pending health crisis and a cure to put an end to this creeping death sentence is still decades away.
Alzheimers New Zealand chief executive Catherine Hall describes dementia as one of the country’s “most significant and ongoing health care challenges”.
While diagnosis rates are set to triple, these numbers don’t take into account the impact it will undoubtedly have on carers, families and communities, she says.
If the status quo remains, there will be 170,000 New Zealanders suffering from dementia in 2050, but only half will have a diagnosis and supports in place.
“That means there is a substantial number of people living in the community with their family who are not supported, not getting help and are struggling,” she says.
For carers, it will mean having to cut back their work hours or give up jobs, which has flow-on effects in terms of their retirement savings or future employment options.
It is not just an issue for New Zealand either, as the entire world is grappling with how to tackle the issue, in the face of inadequate funding models, she says.
“For a long time I think it (dementia) was dismissed as being a normal part of aging and something you couldn’t do anything about.”
This funding dearth also stretches to the research realm, where work is underway to find a cure, along with ways to slow down the disease.
In 2016, $4.8 million was spent on dementia research, compared to the more than $18 million spent on cancer research during the same period.
Alzheimers New Zealand patron Professor Sir Richard Faull doesn't believe a cure will be found for Alzheimer's in the next 20 or 30 years, so researchers are working on pushing back the onset of the disease.
“If you slowed down the progression and the onset by five years that would drop the prevalence by 50 years, because people would live longer, be more switched on, intellectually active and probably die of something quite different.”
“People always say have you cured it yet? We'd love to cure it, but that is a huge ask. We haven't cured any brain disease yet.”
Faull set up the Centre for Brain Research in 2009.
“I call it the All Blacks of brain research because it's people who work together as a team.
“We want to do the best brain research in the world and we are in all sorts of ways. We've our human brain bank. We are also involved with Brain Research New Zealand. We've developed dementia prevention research clinics where we are gradually enrolling people and taking people on in the very early stages of Alzheimer's and doing research on them to see if we can slow down the progression of the disease.”
Pushing the disease back five years would have saved one Auckland woman a lot of heartache.
Her husband John started showing symptoms of dementia when he was 75. It didn't just affect his memory. At one point he became violent.
He would often manhandle her and then one day it escalated.
John threatened to get a knife and chop off her head.
She believed him.
She called mental health services and told them she wasn't safe with her husband any more. They tried to get John to go to hospital voluntarily, but he refused. So they called the police who took him away in handcuffs.
He was transferred to the Ranfurly War Veterans secure unit, which was dreadful, she says.
“He wasn't bad enough to be there. Eventually a nurse said he could go upstairs to the open area during the day.”
After a while John calmed down and his wife was able to safely take him on day trips.
But the stigma around dementia is such that she doesn’t want to be named.
New research shows 40 per cent of people with dementia report they are treated differently. It stops people from identifying symptoms or asking for help.
The stigma and shame that surrounds dementia is something Alzheimers Taranaki field worker Shirley McGlinchey wants to see changed.
It’s holding people back from getting assistance, she says.
It is a barrier McGlinchey wants to see well and truly knocked down.
“If you keep the secret, you don’t get the services,” she says.
The total aged care expenditure attributed to dementia in 2016 was $849.2 million, while community care cost $67.3 million.
Alzheimers New Zealand figures show that every $1 spent on new models of care to keep people at home for longer, could reap a $6.60 saving in residential care.
But New Plymouth man Eddie Betts, who cared for his wife Ali when she had Alzheimer’s, isn’t totally convinced that much would be saved.
The point where people can't take care of their loved one is different for everyone and Betts thinks most people already keep them at home for as long as they can.
“I think most people are doing that, so I wonder how you can stretch that out.”
“It's common for people not to even get diagnosed. And once they get the diagnosis it's 'what the hell do we do now?”
There aren't many people who want to speak up, he says.
“They're reluctant, because they've been bashed up, they're emotionally exhausted. They're getting older and want to put it behind them.”
Betts doesn’t think the view of people who have walked the whole journey is being heard.
“I know that there is a big gap and the government and Alzheimers New Zealand are talking about a navigator and - someone to hold your hand through the journey. People get lost in the system.
“But for someone to knock on the door and say I'm your carer is too late. It has to be in early and the trust built up.”
Every carer has a different experience. Betts’ friend John Finnigan looked after his wife Helen for more than six years.
Helen died four years ago at the age of 79 after suffering from Alzheimer's for seven years.
A nurse, she figured out what was happening to her, but Finnigan says he didn't want to know.
“She was an ex nurse so she had read up quite a bit about it and was quite knowledgeable. She was always on at me to read up on it and I think I was in denial for a while I didn't want to. I think when the realisation that this was going to be a downward spiral I accepted it and tried to help as much as I could.
“The process is always very slow from becoming aware of the problem then seeing the slow deterioration and loss of skills. It was pretty awful really.”
“It was a complete loss of dignity, because they start losing things we take for granted we can do for ourselves, but can no longer do it. Things like cooking and housekeeping they were the first things to go, but then there was the personal aspects of a person's life - their hygiene, having to be showered, toileted. It must be painful for them, the loss of dignity.”
He was happy looking after her, but the public health nurses, assessed the situation and told him it was best she went into care, he says.
“One thing really amazed me. Three or four days before she died she said quite clearly - ‘John are you prepared for what's going to happen?’ I was, but it's always a shock when it happens.”
But because Helen wasn't a 'wanderer' she was able to go into the hospital part of the retirement village rather than the dementia unit.
Wanderers are a problem and don't show the same behavioural patterns as a person who would typically be considered lost.
The usual search and rescue tactics aren't always as effective, Police Inspector Peter Baird, national manager of operations and emergency response, says.
Police are just one “cog in the wheel” of groups who are tackling the dementia issue.
Part of the strategy includes a memorandum of understanding between police and Alzheimers New Zealand.
This establishes an information sharing link between the two agencies, along with a commitment to use best practice principles when dealing with people affected by dementia.
The crossover between the police and dementia typically occurs when sufferers of the disease go missing.
To assist, a project called the Safer Walking strategy is in operation, which aims to reduce the risk of people with cognitive impairment going missing.
So, a Wander search programme has been developing nationally.
Pendants are issued to people with a dementia diagnosis, a device which can then be activated whenever they go missing. This assistance helps to drastically cut the cost, and manpower needed, to conduct a full-scale search.
The average search time to locate a pendant wearer is about 30 minutes, compared to hours which can be spent looking for someone without the technology, Baird says.
Coming to grips with his curtailing freedom, has been the hardest challenge Jim Phillips has faced during the three years he has been living with dementia.
This includes the recent relinquishment of his driver's licence.
“I wouldn't want to drive now, but back then I thought I was as good as any other driver,” the 78-year-old says.
It’s also the point where it hit home that things weren’t going to get better.
“It's a downhill slide. That took a while to swallow. It's not going to get better that's for sure. But it gets a hell of a lot easier when you accept it,” he says.
It was his wife of 59 years, Bev, who first suspected he might have fallen prey to dementia.
She used to work with dementia sufferers during her time at the now defunct Ngahuru rest home in South Taranaki. So when she saw the same things happening to her husband, she recognised it for what is was.
And even as they head into an unknown future, it’s not one they are going to shy away from, Bev says.
“Nothing is hidden, no matter what. Just because he's got dementia that doesn't mean he doesn't need to know what's happening.
Deena Coster and Helen Harvey
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