Nigel Wynn used to have it all. He was a sharebroker, running a firm and managing a team of 30 staff.
He was nicknamed "Casio man" for his ability to remember numbers and work out logistical problems in a flash. He could remember everything, do anything.
That was a few years ago.
Today, he sits in a comfortable chair in his Wellington apartment, a gregarious man who has recently turned 50. On the face of it, he seems like a normal guy. Even when he talks, there are few signs that his mind is being devastated by the incurable Alzheimer's disease.
But Nigel is one of the 2000-plus Kiwis suffering dementia (the overarching term for this disease) before the age of 65. While the average age of people with dementia in rest homes is about 83, it's particularly tragic when it strikes the middle-aged like Nigel, who should be in the prime of their lives, at their peak of their careers.
With about 43,000 New Zealanders suffering dementia right now, as our population continues to age it's predicted there'll be a "silver tsunami" and about 150,000 will be affected by 2050.
It's a disease that is taking over rest homes and causing relatives to lose jobs, sleep and their own mental and physical health as they care for loved ones. Current Alzheimer's drugs treat symptoms only, and only slow down the memory loss, confusion and cognitive decline that affect 35 million people around the world. And, despite more than a decade of research, no cure is on the horizon.
Sitting beside Nigel on a table is his orange iPhone. In another chair is his wife, Tania. Whenever Nigel forgets something, those things take over, acting as his memory. His iPhone beeps to remind him of appointments. Tania, mother of their three children, prompts him when he begins to talk in "loops".
Tania noticed the first symptoms of Nigel's disease about eight years ago when her husband no longer wanted to set goals, was indecisive and wouldn't follow things through. He had been running his own sharebroking firm, Direct Broking, since 1992. It was later bought out by ANZ Bank.
Recalls Tania: "His memory was f....d. I thought I was going nuts. He wasn't aware of his memory problem or the significance of it. The girls at work noticed major issues, but they were loyal to him. It wasn't that he forgot things. It was just that he never got it in the first place."
"It's like the hard-drive is intact but the processor isn't working properly, because the ram can only hold small amounts at one time."
Some things are etched in his memory. Nigel remembers the pain of the spinal tap, the noisy MRI scan, the blood tests that ruled out other possible diagnoses. After being laughed at by her GP, Tania sent her husband to a neurologist, who did a cognitive test. Aged 46, he was diagnosed with mild cognitive impairment - a typical precursor to Alzheimer's. Two years later, the diagnosis was more severe - early onset Alzheimer's, even though the symptoms were the same.
Says Nigel: "It's terrible. I've gone from sitting in a corner of the office dictating to 30 people to vacuuming. You lack company, too. I'm a 50 year old and Alzheimer's people are usually 65 or older. I don't want to be around them playing bingo."
They've dealt with the diagnosis pragmatically. Nigel took voluntary redundancy and they live off his income protection insurance. He stopped driving after he zoomed up the wrong side of Tory St. They shifted from their Johnsonville home to a three-bedroom apartment in town so Nigel could walk or bus everywhere. He mentors small businesses on a voluntary basis, meeting every month or so, and tells them he has a memory problem. Says Tania: "He can spot mistakes, but lacks that processing power to make those changes himself."
Friends don't know what to say, and comment to Tania that "he seemed all right and remembered who I was".
The couple have three children, the youngest just 14. And no-one can tell them the prognosis, how long it will take for Nigel to progress from mild to moderate dementia. Says Tania: "We need to demystify this and do more about it as a community. We also need awareness that this can be a middle- aged disease."
Research comes out all the time about building our brains. Walk 10km a week to boost brain cells. Eat blueberries and walnuts to stave off dementia. The reality is that if you are one of the unlucky ones, such things may delay the onset, or the death of your brain cells, but not prevent the disease.
Multi-national drug companies are racing to find a cure. At the moment, just one drug is available. Recently subsidised by Pharmac, it delays the onset of Alzheimer's by three to nine months, but doesn't work for everyone. Tania says it turned Nigel into "a zombie".
Nigel is still at home, and doesn't yet need help with normal daily functions. It's a different story at the private rest home, Sprott House, in Karori, which has a purpose-built dementia unit housing 24 residents. The hallway is wrapped around it, so that residents can walk around and around when they wander. A tall, thin woman is doing just that, her eyes blank as she walks along the hallway, through the living area and back through the dining room to where she came from.
A group of residents in an internal pavilion with windows are doing physical exercises in their chairs. When lunch is served, most of the residents feed themselves, but a couple need to be physically fed. While residents are quiet around lunchtime, it's a different story later in the day, when, from about 4pm on, they become noisier and sometimes agitated. Just as parents of newborns experience an early evening "witching hour", it's the same here.
There are many different causes of dementia. Alzheimer's is the most common, affecting 50 to 70 per cent of dementia sufferers. Another is vascular dementia, sparked by mini-strokes. Memory problems should be checked out as early as possible to eliminate dementia as a cause, says Alzheimer's New Zealand. In New Zealand:
* 43 people are diagnosed every day with cancer
* 33 people are diagnosed every day with dementia
* 45 per cent of people with cancer die with the disease
* 100 per cent of people with dementia will die with the disease.
At Sprott House, they don't prescribe anti-psychotics and try to divert patients in other ways.
Specialist geriatric nurse Lesley Maskey, who works out of Kenepuru Hospital, is behind a desk writing up files today. She has a caseload of 100 dementia patients. The rewards? "You do become close to families and help them work through a very tough time. You also want to give them a happy moment. People with dementia teach you that you have to live in the moment."
Families often live with guilt when they put a person in care, but Maskey tells them they can no longer give the specialised care that is needed. .
Eileen Smith says she still feels guilty about putting her husband, Ray, into a home four years ago when he was just 60.
But the Auckland woman couldn't cope with working to cover her bills and caring for Ray once she got home and he returned from respite day care.
Ray and Eileen were childhood sweethearts and met when he was 17. He had worked in export sales for 30 years, had smoked and had high blood pressure - all risk factors for Alzheimer's.
In his early 50s, he began forgetting things. He went through a stop light, and struggled to find his way around Athens on a holiday, even though he had travelled there many times before. Recalls Eileen: "He told me, 'something is really wrong'."
At 54, he was diagnosed with early onset dementia. Eileen cared for him at home for six years. But Ray had sleep problems, and was up for much of the night, and his wife couldn't function properly during the day.
"We had one incident where he lost his balance and fell through a ranch slider. I thought, 'What would happen if I wasn't here?'. I thought looking after him was going to be the death of me. It was so constant."
Now when she visits him he doesn't seem to know who she is.
"I get occasional glimpses of recognition. I went to see him a few days after mum died recently, and I told him what had happened and he sat there quietly and held my hand. You wonder if something got through."
Most of the time her visits are difficult. "You sit there quietly and think, 'how much longer is this going to go on?' If Ray knew what he looked like . . . He's in incontinence pads and having to be fed with a bib on. He would hate it.
"There's also the dilemma for the person that is left - how do you get on with your own life?"
At Auckland University's Brain Bank, researchers are studying the brains of Alzheimer's patients, seeing the disease at the end of the line. A normal brain weighs about 1500 grams, but the brain of a person with Alzheimer's has shrunk to 800 grams or less when it is autopsied.
That's because brain cells die and folds in the cortex of the brain have shrunken. Says Richard Faull, an Auckland neurologist and director of the Centre for Brain Research: "Millions of cells are dying. There's nothing to stop these cells from dying. We really want to know why the cells are dying and to stop that."
Alzheimer's was discovered in 1906, but it wasn't until about 20 years ago that it began getting serious attention as people began living longer lives.
It's thought that the disease is triggered by a build-up of protein-based plaques, amyloid, in the brain, and scientists are trying to find ways to stop that process. While there is no way of stopping the disease yet, the focus should be on an early diagnosis, and helping sufferers early. Says Faull: "Everyone needs to know they have to look after their brains. Alcohol does kill brain cells. When you're drunk, your brain cells are being attacked."
Use it or lose it, says Otago University psychologist and Brain Health Research Centre director Cliff Abraham. "Memory loss is not a major feature of normal ageing. It's not as bad as people would like to make out. The brain doesn't fill up - it has plenty of capacity."
He says that storing new information can, however, be more difficult as you get older. Memory can decline for other reasons, too - depression, lack of sleep, certain medications, and stress.
At Sprott House, a garden in the enclosed courtyard is abloom with purple and yellow flowers, all planted by the residents. Families come and take their loved ones out for the day, or visit them, and sometimes ask staff what the point is if the outing or visit isn't remembered, or if the relative or friend doesn't even know who they are.
But Bupa chief executive Dwayne Crombie, who runs 44 rest homes around the country, explains that heart rate and skin tests on severe dementia sufferers engaging in music, games, or social interactions show they still get joy.
"You have to think of providing meaningful moments. There's been a lot of thinking in the past 10 years about providing personalised care. Yes, they've got dementia, but let's not treat them as a medical problem. To get them interacting with staff and families - it's basic humanity."
REDUCE YOUR RISK
The advice from Alzheimer's New Zealand
* Take regular physical and mental exercise
* Eat a healthy diet, ideally Mediterranean-style food
* Enjoy social connections and stimulation
* Minimise the risk of head injury, particularly loss of consciousness
* A United States study found that people who engaged in four or more physical activities, from gardening to biking, had about half the risk of dementia compared with those who engaged in one or none. Risks increase if you're obese, overweight, have high cholesterol and high blood pressure.
Sprott House has a long waiting list for its dementia unit. Crombie explains that's typical around the country, and expected to worsen. The cheapest and best option is to keep patients at home for as long as possible. But some carers struggle to cope, and district health boards, which fund day respite care, have no more money.
When residents become challenging, or fail to sleep, about a third are prescribed anti-psychotics, according to Bupa. If they're in a dementia-specific unit, more than half are on medication. It's a statistic Crombie is keen to change. "The costs are considerable. The side effects are incontinence and loss of balance, and higher mortality rates. There is a place for them, but there's far more use of these things than there should be. We need more staff and the training of more staff who can deal with challenging behaviour."
It doesn't help, says Crombie, that we don't have a Government-led dementia strategy, like Australia and Britain. Here, heart disease, diabetes, cancer, immunisation, smoking and shorter emergency department stays are targeted by health boards. The Health Ministry has a dementia project, and will shortly release a draft guidance document for consultation, which is aimed at providing better services for people with dementia. It is also setting up support services attached to a DHB in each region for dementia sufferers with behavioural problems, and is aware that we'll need more dementia beds, too.
Says Crombie: "In 30 to 40 years, we're going to have 150,000 people suffering from this, and there's no immediate cure on the horizon. Other things that aren't as big a problem have a cohesive plan. The Ministry of Health has never had much interest in dementia."
In a recent Alzheimer's Disease International report on the disease, it was estimated that if Alzheimer's was an economy, it would be the 18th largest in the world. It is already costing 1 per cent of the world's GDP. Alzheimer's New Zealand head Johan Vos says the Government could save $63 million a year by keeping sufferers out of resthomes and geriatric hospitals for an extra three months, and is pushing for more resources to keep people at home. "When there's no hope, and no cure, there's a stigma around it. Cancer used to be the big C. Now everyone talks about it. I want to turn the big A into Alzheimer's."
Some are hopeful, though. At the Memory Clinic in Auckland, 14 mild to moderate Alzheimer's sufferers are being given an experimental drug called bapineuzumab. The third stage of an international trial involving thousands of sufferers, the goal is to reduce amyloid in the brain. The second stage of the trial showed that amyloid had dropped by 25 per cent and also lowered the levels of tau, a toxic protein in the brain that is thought to cause cognitive decline.
According to a recent article in Time magazine, reducing amyloid in some patients in one trial didn't lead to improved cognitive function. Did they catch the disease too late, or is amyloid just one trigger?
The Memory Clinic's geriatrician Phil Wood says treatments are pointless if the drug doesn't improve memory and thinking problems in dementia sufferers. "We need to know if it's making a difference, or are you just mopping up the fire that has occurred?" he says.
And while better diagnostic tools are available, New Zealand is a bit behind. Doctors in Europe take fluid from the spine and test for amyloid in the brain, but that's not common here. Another technique, using imaging to spotlight proteins in the brain, is not yet done, although the technology has recently arrived in New Zealand. For now, the only conclusive result is when brains are autopsied.
As long as 20 years ago, Wood was involved in the trials for Aricept (donepezil), which slows down the onset by three to nine months. "That's the only funded treatment. Despite 10 to 15 years of further research, nothing else works."
Relatives want to know if they're likely to get the disease. They can get a blood test to check for the APoE gene, a risk factor, but specialists such as Wood don't recommend routine testing because no preventative treatment is available and DNA is not destiny.
Ray Smith's daughter, Sarah Lee, sent a saliva sample to a lab in the United States a year ago and learned she had a 75 per cent risk of getting Alzheimer's. Says Lee: "It threw me a little bit at the time. I was prepared for a larger risk, but not for 75 per cent. It turned out that I had risks from both dad and mum's sides."
Forty-two-year-old Lee was pragmatic. Rather than plunging into depression, the mother of two quit her stressful job and found a job that allowed her to work mainly school hours. "My boys are 11 and six, and I realised that my life was quite hectic and that was one thing I could change."
How is her memory? "Good. But I would have said that about Dad at the same age. I'm controlling what I can control, but I'm not going to fret about it."
Lee sees her father in the home regularly, but finds the visits difficult. He shouts to communicate. He doesn't know who she is. "The people who care for him are saints. Mum cared for him for a long time and he deteriorated quite rapidly when he went into care. He wasn't even 60 and he knew what he was doing to some extent. He was like, 'What's going on? Why am I playing housie with 80-year-olds?' Trying to convince Dad that Mum needed a break was harder than anything. It was a very difficult decision to make."
Lee has done her grieving for her father. "We mourned for the fact he was only 54. There needs to be awareness that it's no longer just an old person's disease. The terrible thing is that if you get an Alzheimer's diagnosis you know nothing can be done. I don't want to belittle what people go through with cancer, but there are lots of survivors. Alzheimer's won't kill you, but what it will do to your brain will kill you."
- © Fairfax NZ News