Few things are more cruel than dementia

Four years ago I lost my grandmother to dementia. But in reality she was taken by this cruel brain annihilating disease many years before she actually passed away.

Brain aging and memory loss due to Dementia and Alzheimer's disease with the medical icon of a group of color changing autumn fall trees in the shape of a human head losing leaves as a loss of thoughts and intelligence function.

Four years ago I lost my grandmother to dementia.

But in reality she was taken by this cruel brain annihilating disease many years before she actually passed away.

The insidious way it ate away at her memories, erasing a lifetime of bonds, moments and joy was incredibly difficult for my close-knit family to watch, but one can only imagine how excruciating it was for her.

To be trapped inside a mind that was slowly becoming a shell of what once belonged to an incredibly intelligent, quick-witted and strong woman must have been mental torture for my grandmother.

Not that we’d ever know.

Because in the end the woman I admired so vehemently and had spent so much of my childhood and young adult years with could barely communicate, let alone know who I was.

She died aged 79 with her husband, children and many of her grandkids by her side on an exceptionally freezing Melbourne night. It was cold and unforgiving, as though dementia had given the family a fitting parting shot.

My grandfather, her most loyal and loudest advocate and love of her life, has not been the same since. And in a cruel twist he too is in the middle stages of dementia and being cared for by my aunty who has made many sacrifices to give his life meaning and value.

But mine is certainly not an uncommon story.

About 340,000 Australians live with dementia, however the impacts are far more reaching with around 1.2 million people directly involved in caring for family members.

Whereas an illness like cancer is tangible with real treatment options, many fundraising arms, and lots of visible support networks, dementia simply doesn’t have the same standing.

It’s an insipid disease that doesn’t garner public empathy like cancer does.

It’s often joked about in a colloquial “you’re getting old mate, must be Alzheimer’s kicking in” way, but the reality for those living with it and their carers, it’s not a funny issue and in fact does a disservice to them.

People like media identity Ita Buttrose have done wonders to help raise awareness of dementia with her role as Alzheimer’s Association Ambassador, as has former Australian first lady Hazel Hawke who has left a legacy in the area.

Likewise Hollywood royalty Julianne Moore last month won an Oscar for her portrayal of a woman diagnosed with early onset dementia in the confronting blockbuster Still Alice. In fact I’d encourage everyone to watch this film for a very real and sobering depiction of a disease that will affect 50 per cent of the population after the age of 85.

In the Northern Territory it is estimated that around 4000 people suffer from dementia, with the figure four or five times higher the national average for indigenous Territorians.

The real number of dementia in and around Darwin is probably much higher, with pockets of ethnic communities — including Greek, East Timorese and Filipino — usually underreported.

Whether it is a stigma that a diagnosis brings or lack of understanding as to what dementia actually is (some simply attribute a forgetful mind to a natural extension of the ageing process) it can sometimes go unnoticed or dismissed.

So it is certainly welcome news that the Federal Government recently provided Alzheimer’s NT with a $100,000 grant to fund an officer to get into these Top End communities and work with those diagnosed as well as their families.

It’s a positive move but on a national level more must be done to raise the profile of disease that will affect close to one million Australians by 2050 if a cure is not found.

Just as vital as Government investment into dementia research is the provision of real respite options for those selfless carers who often put their lives and that of their families on hold to take care of an ageing family member.

Because the reality for carers isn’t just repeatedly answering the same question or conducting the same mind-numbing conversation with a forgetful elderly parent.

The reality is living in a state of disconnect or isolation as they watch their loved ones endure a gradual and painful deterioration in one of the cruellest ways possible.

It’s having to be on a constant heightened alert to make sure a parent doesn’t wake in the middle of the night and decide to take a walk across a busy highway.

It’s having to remind a parent to eat dinner, or turn the gas off, or go to the toilet.

Or even of who their grandchildren are.

And it is doing all this while giving their loved one a life of purpose, meaning and dignity, even after all their memories have gone.

Originally published as Few things are more cruel than dementia