'At 21, I'm carrying an unbearable grief, no one my age understands.'

Emily Hausman had always been exceptionally close to her grandmother.

Anne* picked Emily up from school as a child. She took her to ballet lessons. They bonded over cooking, and it was Anne in the passenger seat teaching Emily to drive.

Emily never missed a weekly dinner. Anne never missed a milestone.

Now at 21, Emily has regular phone calls with her 76-year-old confidant to swap stories; "How's your love life?," Anne often asks.

"She's always gotten me," Emily tells Mamamia. "We laugh about experiences together, we used to make cooking videos together… it's such an important bond."

Emily grew up as an only child for 10 years and was so close to her grandparents.

Emily also benefitted from her mother's encouragement of the grandmother-granddaughter relationship, which helped create a unique support system that Emilytreasures.

Growing up with only adults had benefits; she often travelled and developed great interpersonal skills, but she felt like she "missed out" and "felt different" to others.

During a rough time at school, Anne reassured her. "I never felt alone, I always had her support."

Ten years ago, Emily noticed Anne's behaviour changed.

Aged only in her mid-60s, a teenage Emily saw Anne's confidence and memory shift. Emily found herself repeating conversations.

"She wasn't herself," Emily explains. "She's always been an incredibly bold, outspoken woman… she had a wittiness about her."

"Then she became a little more reserved… I noticed subtle behaviour changes, as in not feeling as confident to drive. There were patterns that were different to her normal state."

A few years after Anne's demeanour changed, she was told she had dementia.

Dementia is a decline in cognitive functioning. It's a general term for brain syndromes causing a person to lose their ability to think, remember, and reason.

Watch: Learn more about dementia. Post continues after video.

It's progressive and impacts a person's independence.

As a family who values communication and education – it has been a unique heartbreak for Emily watching Anne struggle to find her words or forget a happy moment.

"It feels like a bit of a death, a death of a person, even if they are still around," Emily says.

There is no cure for dementia, and few effective treatments. In severe cases, people have personality changes, struggle to walk and talk and can't recall loved ones.

Not knowing how dementia is going to affect Anne, terrifies Emily. She thinks about Anne forgetting her "all the time".

"It scares the sh*t out of me," she admits. "I'm scared for her, seeing her not being the person she was. You lose your ability to critically think for yourself, you lose yourself."

According to Dementia Australia, more than 421,000 Australians live with dementia, and without a medical breakthrough, that figure is expected to double in 30 years.

While there is research underway and resources for people with dementia, there is little support for the 1.6 million Australians caring for someone with dementia – particularly young carers.

Emily is a carer for her grandmother, alongside her uncle and 80-year-old grandfather. Despite the 50-year age gap, Emily is a maternal comfort for Anne.

"She doesn't have a daughter, and it's amazing for her to have the support of a daughter figure… I am her best friend in a way," she says.

At only 21, the Sydney university student sacrifices time with family and friends to phone Anne, help around her house, and sleep, after an enjoyable, but often emotionally draining visit.

"She's always on the back of my mind… like today she's not in great spirits so we went and got cakes… I don't know what other 20-year-olds are doing in their lunch breaks – but I've chosen to have cakes with my grandma."

"Anything to put a smile on her face... even if she doesn't remember it the next day."

Emily studies, works, and volunteers. But an invisible string tugs at her heart every time it longs for life abroad.

"I am scared… if I go away for six months, will she remember me when I come back?"

Juggling life as a carer in her 20s inspired Emily to connect with young people with the same experience. She is creating an "uplifting" support group for young carers of those with dementia to share their unique grief.

"I've been so lucky to have my mum's support, which has enabled me to take on thisimportant role while maintaining my studies and work life. My mum has alwaysunderstood how important it is for me to be there for my grandmother," Emily says."She's been incredible in helping me balance everything."

"I want to unite people, in a positive way, and break the silence and stigma," she says.

While Emily handles the physical tasks of helping Anne, it's the "emotional pain" she wants to learn to manage and help others with.

"Going to a dark place is not an option… I have to put my energy into helping people," she says. "(Anne) would not want me living my life in fear."

After attending an event by the Centre for Healthy Brain Ageing (CHeBA) at the University of NSW, and meeting Postdoctoral Researcher Katya Numbers, Emily decided to form a support group.

Dr Numbers was surprised to learn few resources existed for young carers of people with dementia. She has seen through her work how the anxiety of caring for a loved one can become overwhelming and isolating.

"Finding out a loved one has it, that it's progressive and non-reversible, there is a lot of grief," Dr Numbers tells Mamamia. "You start to mourn the person, before they're even gone."

Listen to No Filter where author of The Long Goodbye, Keri Kitay, shares with Mia Freedman on what it's like to have a mum who has Alzheimers. Post continues after audio.

A focus of research at the CHeBA for dementia is early identification and lifestyle intervention; finding dementia as early as possible, and modifying diet, exercise, and social support to slow it down – the biggest risk factor for dementia is social isolation.

Dr Numbers has encouraged Emily to create a support network for carers to feel less alone and share resources, because they too can feel disconnected – putting them at risk of cognitive decline. "It's empowering coming together."

No matter where Emily's grandmother's journey with dementia takes them, Emily will hold her hand the entire way.

"We still enjoy doing things together, we walk the dog together and cook cakes. It might take longer but that's OK," she says. "I'll always support her, even if it comes to stage she doesn't remember me. I'm so grateful for what she's done in my life."

Contact Emily on her email emilyhausman01@gmail.com to get in touch about the support group.

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Feature image: Supplied.