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.

North & South - - Science -

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.

Pre-de­men­tia trial par­tic­i­pant Graeme Newton, with his wife, Jay.

Auck­land neu­ropsy­chol­o­gist Dr Christina Ilse.

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