Fending Off Dementia
Up to 400 patients are being recruited for the country’s most intensive study of memory loss and pre-dementia. Donna Chisholm talks to one of the first participants.
The first time Graeme Newton saw a doctor about his memory loss was after he folded his dirty laundry and packed it in a yellow council rubbish bag instead of the washing machine alongside.
There were smaller warning flags before that – getting distracted on the way to the kitchen to make a cup of tea, then not remembering why he was there; forgetting the names of a few people he knew well; feeling uneasy and disoriented at a party with friends. But the jarring sight of the pile of shirts, underpants and socks neatly folded in the rubbish was, he says, “the final straw”.
The GP visit led to a consultation with a geriatrician, who, after a battery of tests, found Newton’s cognitive function was “at the bottom end of normal”. For a fit septuagenarian with a successful career in market research and business mentoring behind him, that sort of score, the doctor said, was “not usual”.
Three years on, Newton, 74, is one of the first recruits signed up to a planned three-centre rollout of Dementia Prevention Research Clinics to study people, like him, who have been diagnosed with mild cognitive impairment (MCI). The clinics, in Auckland and Dunedin, with Christchurch expected to launch later this year, are the public shop window of Brain Research New Zealand, a $ 30 million government-funded Centre of Research Excellence launched in 2015.
More than 50 patients of a planned 400 have already had the first set of what will become annual tests, including blood analyses, clinical and neuropsychological assessments. Newton, the second patient on the clinics’ books, will have his follow-up assessment at the end of March and that will show to what extent – if any – his brain
function has changed.
The idea is to form a cohort of people ready to take part in a range of clinical trials of interventions that the researchers hope will reduce or delay the onset of degenerative conditions such as Alzheimer’s disease.
Newton says his first goal is information about MCI. “What is it, what are the possible consequences, what could it lead to, what can I do to stop it or slow it down? Also, why me? Why has this thing, whatever it is, picked me?”
Most of us worry we’re starting to lose our marbles when we can’t find the car keys or forget a coffee date. “Everyone has some form of memory loss; mine is a bit worse than that.”
Neuropsychologist Dr Christina Ilse, who is assessing the participants at the Auckland University-based Centre for Brain Research, says people with MCI are able to do their usual activities but just need a bit more help. “They may need more reminder lists, use a cookbook when they didn’t need one before, or check the map more often when driving. They’re able to function as per usual, perhaps with a little more effort, in everyday life.”
They might forget things that happened recently (such as a conversation they had the week before with a friend about a movie they’d both seen), become more easily distracted or take longer to find the right word.
Newton says his life is now governed by lists of tasks he might otherwise forget, from restringing his badminton racket to pruning the roses. “I’ve always been very well organised, both in business and home life, and mostly I haven’t needed to write those things down. I remember. But gradually I’ve needed those reminders more and more.”
In conversation, there’s little evidence he has any problem – “I’ve become better at disguising it” – although occasionally he’ll lose his train of thought after a small interruption. But who hasn’t had that happen?
His life has, however, become increasingly proscribed. He finds it hard to follow discussions in a group and shies away from some social functions; mental arithmetic is also more difficult. He has no trouble driving but prefers not to drive to places he doesn’t know well, and feels international trips are beyond him, despite the fact that he’s a seasoned world traveller. “I feel uncomfortable thinking about going to a hotel and having to find my way to somewhere else. It’s getting out of that comfort zone, which I now need.”
Instead, he and his wife Jay took a Pacific cruise in March. “Being able to go on a boat, unpack once and have something familiar to come back to each day and a choice of what to do is fine.”
Although he’s taken up petanque, which he plays twice a week, along with the badminton he’s played socially and competitively since his school days, he’s had to give up other pastimes. “I always used to read in bed at night, but then, I couldn’t remember what I’d read when I opened the book at the same place the next night. It was pointless, because I’d have to keep going back a bit further and a bit further.” Newspapers and short magazine features aren’t a problem, and he enjoys Sudoku and other puzzles.
Jay has recently resigned her role as a store manager at Whitcoulls and reduced her hours to part-time so she can spend more time with him. “If he does progress and develops brain disease, our time could be limited so if we are to spend more time together, that has to happen now.”
Her father had Alzheimer’s, so she understands what might be ahead. “I’m very sad that this is affecting our lives but we’re very lucky to be part of the brain- research team and both of us would like to raise the awareness of MCI so people who have it get help.”
She says they’re focusing on a healthy diet, physical activity, brain teasers and heart health, but they’ve both noticed a slight deterioration in his memory. “He’ll repeat things he’s told me the previous day or the day before.”
He’s also liable to become anxious at social occasions if he can’t see her or
“I always used to read in bed at night, but then I couldn’t remember what I’d read when I opened the book at the same place the next night. It was pointless.” GRAEME NEWTON
know where she is, so they’ve introduced systems to reduce his distress. She texts or leaves a note if she’s going to be late, and makes sure she doesn’t leave him alone in a room of people.
Ilse says all the clinic participants are given the same advice on the best ways to try to slow the progression of their memory problems: to stay socially, cognitively and physically active, and have a healthy, balanced diet, avoiding processed food. Many already play golf or bowls or take part in walking groups, she says, but those who’ve stopped exercising are encouraged to restart.
Estimates vary as to how many people with MCI will develop Alzheimer’s or other forms of dementia. Some studies suggest five to 15 per cent a year, while one meta-analysis found more than 60 per cent of MCI patients would not develop dementia after 10 years.
Because many people coping with MCI don’t seek medical help – and there are few clinics set up to diagnose it – Ilse says it’s impossible to assess the scale of the issue. It’s estimated around 50,000 New Zealanders suffer from dementia, and that figure is predicted to top 150,000 by 2050.
Centre for Brain Research director Sir Richard Faull says it’s not yet decided what trials the participants will be involved in, but they won’t be just drug trials. They’re likely to cover a wide range of factors known to influence dementia, including nutrition, the environment, and social and cognitive activities.
“There have been oodles of trials looking at different drugs and so far, unfortunately, we don’t have a magic drug cure. This is a complicated disease. It’s like you have a rusted-up Rolls Royce down there and you’re going to put a magic pill in the carburettor. It’s not going to work, but people are besotted that one pill will actually fix it.”
Scientists will also examine the blood of the participants for biomarkers or biomarker patterns that might predict which people with MCI might progress to dementia.
Associate professor Lynette Tippett, the director of the clinics’ national network, says researchers internationally have been looking for blood markers for a number of years, with none of the findings able to be replicated so far.
“The realisation has come that many of the findings might well be artefacts of the way the blood is pre-processed, and that has cluttered the literature. We’ve come in at just the right time because there’s now a very detailed set of international guidelines about how it has to be done – we have the benefit of all the errors that have been made and the knowledge that’s come from that.”
A big area of interest for one of the Auckland research teams, under the leadership of neuroscientist Professor Mike Dragunow, is whether disruption to the blood-brain barrier, allowing molecules into the brain that shouldn’t be there, has a role in the development of Alzheimer’s. Scientists will be able to examine the integrity of the barrier through markers in participants’ blood serum.
MRI brain scans, which will be done on participants every second year, will give a clearer picture of the role of vascular conditions, such as hypertension and diabetes. Internationally, says Tippett, drug trials have looked at the small proportion of people who don’t have any vascular risk factors, on the grounds that those are not pure Alzheimer’s disease. “But what they might be doing, in looking for only one indicator, is actually eliminating the majority of people who develop Alzheimer’s.”
The routes to dementia are likely to be different in each individual and involve the interaction of many risk factors, she says.
Because research funding is $10 mil- lion short of the amount requested, fundraising is underway to make up the shortfall, through the NZ Dementia Prevention Trust, run by a group including businessman and philanthropist Sir Eion Edgar ( chair), former deputy prime minister Sir Don Mckinnon, international financial consultant David Mace and banker Sir Ralph Norris. More than $3 million has already been promised, with Edgar, a former Otago University chancellor, personally pledging $1 million over 10 years.
Apart from raising awareness of MCI and increasing support for people with it, Graeme Newton hopes the research will give him a chance to regain the brain function he’s lost. Studies suggest some people diagnosed with MCI can revert to being cognitively normal, although they do have a higher likelihood of developing Alzheimer’s later. “I intend to be one of those people who don’t develop Alzheimer’s. I’ve taken a positive attitude, to get on and do what I can and enjoy life.”
For Newton, who spent his career in market research, being involved in the studies seems a small but appropriate move. “Research in a broad sense has been my background. I always believe in getting information, in testing things. I was the tester before; now I’m the tested.” +
• North & South will follow Newton’s progress over coming months. His next assessment is due at the end of March.