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Home / Bay of Plenty Times

Opinion: Navigating the rapid cognitive decline of Alzheimer's

By Dawn Picken
Weekend and opinion writer·Bay of Plenty Times·
20 Apr, 2018 04:06 AM5 mins to read

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Alzheimers New Zealand says 80 per cent of us know or have known someone with dementia. Photo/File

Alzheimers New Zealand says 80 per cent of us know or have known someone with dementia. Photo/File

REMEMBERING: Alzheimers New Zealand says 80 per cent of us know or have known someone with dementia. PHOTO/FILE A_MC110917NADALZ3.JPG

The word "flippers" stared at me, scrawled on a page.

Our family was about to spend three days at a campground in Taupo during this first week of school holidays, and my packing list included butter, pancake mix, pasta, carrots … and flippers.

Was I really meant to bring swim fins? We don't usually take them.

"Are you sure it doesn't say slippers?", asked Miss 14.

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"I don't think so," I told her.

I'd already packed the slippers. I resumed cramming food into canvas sacks while ticking off remaining items.

A few minutes later, I remembered: I had made the unusual substitution of 'flippers' for 'spatulas.'

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We needed something to flip pancakes. I must've looked worried, because Miss 14 asked what was wrong. I explained I had just finished a novel called Still Alice (the book by Lisa Genova was made into a 2014 movie starring Julianne Moore. The trade-off to buying e-books at a deep discount is waiting several years after their release to read them).

In case you haven't seen the movie or read the book, I'll give you a brief synopsis: it's as terrifying as any Stephen King novel.

Still Alice describes, in vivid detail, the rapid cognitive decline of Alice Howland, a Harvard linguistics professor diagnosed with Alzheimer's disease at age 50.

The opening chapter contrasts her husband's usual forgetfulness – he's in a rush to leave and can't find his glasses or his keys – with Alice's failure to remember a word during a lecture, then getting lost on a run near home.

While Still Alice is fiction, author Genova heavily researched the book, earning endorsements from Alzheimer's advocacy groups and praise from those living with the disease.

Told from the keenly-envisioned perspective of someone in the throes of anxiety who bears weight of inevitability attached to Alzheimer's, the novel offers a window into what it might be like to have the disease:

"I have no control over which yesterdays I keep and which get deleted," Alice said.

It's hard, after reading about monumental memory loss comprised of myriad episodes of forgetfulness (Alice leaves her phone in the microwave; another time she can't find the toilet in her home) not to wonder whether "I can't find" or "I forgot …" is a normal experience born of inattention and information overload, or whether any of us over aged 40 are starting to lose more than our fair share of neurons and glia.

I once heard a neurologist during a radio interview say forgetting where you put your keys is normal; forgetting what keys are is not.

It's no comfort, though, when my 12 and 14-year-old children burst out with, "Mum, you have Old-Timers!" each time I ask them to repeat something they've already said.

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Part of it, I tell myself, is lack of focus. How do you retain information while cooking dinner, updating your online calendar and listening to your kids' stories? I don't. Times like that turn my brain into a sieve.

One thing at a time. It means resisting temptations of false efficiencies. This is why scrillions of people worldwide meditate. To quiet their minds. To learn to focus.

Alzheimers New Zealand says 80 per cent of us know or have known someone with dementia. The organisation this week rolled out a programme called Dementia Friends, to connect those diagnosed with the disease to helpers.

By 2050 more than 170,000 New Zealanders are predicted to have dementia - the majority of which will be Alzheimers. The total cost of Alzheimer's in New Zealand is around $1.7 billion and is expected to climb to $5b by 2050. Dementia rates are about 30 per cent higher for women than men. Of all the people with Alzheimer's disease, about five per cent are diagnosed before age 65.

There is no cure for Alzheimer's, and only a few drugs have proven to have any effect in alleviating symptoms.

Treatments for the underlying cause – brain cell death – may still be many years away.

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Just last week, a drug called azeliragon flunked its phase 3 trial, which included Kiwi patients.

The treatment failed to beat out placebo in improving cognitive or functional outcomes.

A 2014 Cleveland Clinic study found a 99.6 per cent failure rate of clinical trials for Alzheimer's drug candidates between 2002 and 2012.

Earlier this year, news was published about a blood test that can predict early Alzheimer's with 90 per cent accuracy. Last year, we learned brain cells grown in a lab could one day be used to repair damage caused by the disease.

In the end, we ask whether any of these advances will come in time for us. It's already too late for too many of those we love, like my friend whose mum died at aged 70 after battling Alzheimer's for more than a decade. We ask whether all that time and money spent taking our families on holidays to make memories will be worth it if those memories self-destruct in a web of plaques and tangles.

We write lists. And play memory games. And pray it won't happen to us.

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Or, like Alice, whose yesterdays are disappearing and whose tomorrows are uncertain, we live for the moment. It's all we ever have.

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