'My mum is still here. But I have been grieving her loss since her diagnosis last year.'

It’s been 18 months since my Mum was diagnosed with Early Onset Alzheimer’s Disease at the age of 59. Eighteen months since my sister, father and I were told that what had originally been diagnosed as anxiety, depression and a touch of Post-Traumatic Stress Disorder was actually far more insidious, and unfortunately far more permanent.

The woman that we love so much is, in many ways, gone. Mum was a highly sociable, active, warm, and interesting woman. She was the kind of woman who was always the life of the conversation, telling stories that would make everyone around a table dissolve into laughter, and always have a kind word for a stranger – every skill I have in the realm of emotional intelligence, I owe to her.

She was a successful, highly intelligent, professional woman. Now, sadly, she can’t concentrate for long periods, gets confused and disoriented easily, is unable to remember many things (including her own daughter’s surname) and needs to be taken to the bathroom because she’ll get lost trying to find it. She sits quietly in her own world and doesn’t tell stories anymore.

It takes a lot to make her laugh. She grasps for words, isn’t as warm and loving towards us, makes a lot of spelling errors when she writes text messages – which would mortify her if she could realise, as she was an English teacher – and has lost some of her inhibitions. Her only outing each weekday is to the same coffee shop down the road, by herself.

I know I should be thankful that she’s still with us and that occasionally we get to glimpse the ‘old Mum’. Many children are robbed of a parent at a much younger age than my 31 years, and without the chance to say goodbye. In some ways, yes, I’m lucky. But with Alzheimer’s you grieve twice – for the person they were before the disease took hold, and then, later, all over again when they pass away.

Mum was much too young to be struck down with this horrible disease. Now 61, she should have been enjoying the twilight of her career, and making plans for a retirement filled with travel, seeing friends and reading good books. Many of her friends and members of our extended family of the same age – some of whom have drifted out of her life since the diagnosis – are enjoying that stage of life and the fruits of their many years of labour. Mum won’t get that chance. Instead, my Mum will likely be in an aged care facility before she’s even reached the age of 65.

There’s no cure. There’s no treatment that is proven to stall the symptoms for any significant period of time. Each sufferer’s progression through the various symptoms is individual, so you don’t know how long you’ve got, but we know that Early Onset tends to progress particularly quickly. A number of drug trials are occurring, including two at the Austin Hospital in Melbourne, but we’re years away from a breakthrough.

The best that my sister and I can hope for is to keep Mum in her home for as long as possible, and to create some memories together before things get too bad. We recently took her to Hawaii as she had always wanted to go there, and she had a wonderful time. The sad thing is that we don’t know how long the memories from that holiday will last for her.

Early or Younger Onset Alzheimer’s – a form of dementia – affects around 25,000 people in Australia and is a disease that attacks the brain. ‘Younger onset’ is considered to be anyone under the age of 65, but there are cases of people in their 30s and 40s developing it. Most sufferers won’t ever meet another sufferer, unless they engage with one of the support services available in the community. I recently attended a session at Alzheimer’s Australia and it was the first time I had ever met a person my age whose parent is going through the same thing.

The awareness of this particular form of dementia has grown over the past few years because of the book ‘Still Alice’ and its movie adaptation starring Julianne Moore. But in Australia, we haven’t reached a stage where there is a major public awareness campaign, or a concerted drive for community donations similar to other terrible degenerative diseases, such as Multiple Sclerosis (remember the MS Read-a-thon?) or the recently completed Movember.

As a community, we have to do more. I truly believe that if we can raise awareness and improve the level of donations, bequests and other funding, that there will be a cure in sight for Alzheimer’s. It won’t help my family, but it might help yours.

To donate to Alzheimer's Australia, click here.

Stephanie Elwin is a management consultant based in Melbourne.