Health

“I lost my ability to speak, I forgot my family members’ names”: What early onset dementia is really like

Natalie Ive was diagnosed with dementia at 48. Here's her story.

Many of us associate dementia with a parent or grandparent who retells stories and forgets days of the week – or even something we ourselves are starting to grapple with in our retirement years. But this image is reductive and incomplete says 51-year-old Natalie Ive, who is living with early onset dementia.

“Younger onset dementia, also referred to as early onset dementia, is any form of dementia in people under the age of 65,” says Dementia Australia CEO, Maree McCabe.

“Dementia affects all people at different ages or stages of life,” Natalie adds. “Younger children are now being diagnosed with dementia, such as childhood dementia. There are young adults in their 20s, 30s, and every stage of life, including the elderly. Even though these might be rare, the occurrence is happening, and we’re slowly starting to see that, which is really concerning.”

In 2023, it is estimated there are more than 28,650 people living with younger onset dementia. This figure is projected to increase to more than 42,400 by 2058, as per Dementia Australia.

Natalie was around 48 years old when she was first diagnosed with Mild Cognitive Impairment (MCI). She has a background in mainstream and special education spanning over 15 years. In 2021, she was diagnosed with Primary Progressive Aphasia (PPA). This is a rare form of dementia that affects one’s ability to communicate, understand, express thoughts, and find words. The diagnoses took two to three years in total. 

“I first realised something was different with me when I began to have trouble finding the words to say, or think of them.”

“This was different for me as an educator, I was used to talking academically and writing reports with relative ease. I started to use Google or ask my daughters to help me when I had word blanks. And there were many word blanks.”

Natalie (right) was diagnosed with Mild Cognitive Impairment at around 48 years old.

“Gradually, I started to notice that my spatial awareness crossing the road would sometimes be difficult. I could not work out the distance between the car that was approaching and making it in time to cross the road. My daughters would assist me to cross the road safely, if required.”

It was a confronting time for Natalie who was “left crying” in her lounge room following the diagnosis. 

“‘What am I going to do? Where do I find the support?’,” she remembers thinking at the time. “There are currently limited or no services post diagnosis for people living with dementia. There exists a huge gap in resources. My next thought was, ‘What do I do with all these symptoms happening to me?’.

“It was a very frightening place to be in.”

While Natalie has had a long-term and supportive GP throughout her journey, and commends the work of the Allied health services, she has found that neurologists haven’t been able to assist.

“That’s the sad, concerning, and frightening thing about it, that they’re not able to do that. And these stories are unfortunately commonplace. We’d really like to see a change happen here, that people are supported.

“I reached out to my GP, to access a referral to see a speech pathologist to seek their professional testing, due to my challenging communication difficulties progressing. Other than that, there are no services in the community.”

According to CEO Maree, as people with younger onset dementia often retain good physical health, this “can affect the appropriateness of dementia services that are targeted mainly at older people”.

Natalie with her family.

Apart from medical professionals, Natalie also has the support from her family, who have been by her side since her first visit to the hospital.

“I lost my ability to speak, I lost my surroundings, and forgot my family members’ names,” she says. “They called the ambulance, initially they thought it was for a stroke. I know the story now, as my family later explained what happened to me, as I don’t really remember much at all of that event.

“I’m just so thankful that I’ve got a loving and supportive family around me.”

There is the occasional instance when Natalie is treated differently by those unacquainted with early onset dementia. The 51-year-old believes this is due to a lack of understanding.

“Many have told me, ‘you don’t look like you have dementia’. But what does dementia look like? The words we use affect how people with dementia are perceived and treated, and impacts the support and empowerment they feel within society.”

She continues: “To dispel the misconceptions and stereotypes about dementia, we need increased community education.

“Councils, community associations, businesses, and Primary Health Networks need to all come together and discuss with people living with dementia and their carers and ask the question: ‘what do you and others living with dementia in the community actually need from us?’”

Natalie has made changes with her gym to make it more accessible for those living with dementia.

A place where Natalie has felt her early onset dementia has been acknowledged and respected is her local gym, Fitness For Her in Altona Meadows, Victoria.

“I first approached gym manager Charlene about my diagnosis so that I could feel a part of the wonderful and supportive community that the gym offers,” she tells us.

“Instead of hiding my diagnosis, I thought to myself, it’s time to open up, raise awareness, and seek the support I require.”

Upon sharing her story with Charlene, Natalie was greeted with a “big smile” and a promise to help. One of the most prominent changes has been the inclusion of pictures onto signage, to increase accessibility for those living with dementia.

Natalie is unsure how her younger onset dementia will progress, but she knows symptoms will worsen over time.

“My speech and communication will deteriorate into the future. But what that will look like, no two people with dementia will present in the same way.”

If you suspect you or someone you love has younger onset dementia, Dementia Australia is here for you. Learn more about younger onset dementia and the support available to you on our website, or by phoning the National Dementia Helpline on 1800 500 100.

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