When Nelle Goodwin started to forget conversations she had with people and called appliances in her home by the wrong name, she knew it wasn't just simply being forgetful.
Nelle worked as a disability worker, trainer and assessor for 30 years. She knew what the signs of dementia were.
At 51-years-old Nelle was diagnosed with younger onset dementia in 2019 after three years of being told by doctors that it was stress causing her symptoms.
"It took a long time for me to be diagnosed, which was frustrating because if it had been caught earlier, I could have started medication to reduce the rapid onset and the cognitive deterioration I am now experiencing," she said.
"My favourite thing to teach when I was a trainer for disability workers was dementia care, which is quite ironic."
When Nelle first started experiencing poor memory loss she had to rely on people to remind her where she had to be at certain times and when she would visit her clients for work she couldn't recall what she did with them or their conversation to write up her own notes. Doing simple calculations was difficult and she was quite fatigued all the time.
"You can only do what you can and deal with what you've got," she said.
Nelle lives with her husband and has support workers who visit each day to help her with a range of different everyday tasks.
"I'm working on my mobility issues as I tend to lean to the left and my support workers will walk on that side of me to help me balance and not run into things," she said. "I do forget to do a lot of things so having a big whiteboard with my daily, weekly and monthly routine in my home really helps."
Nelle has also been diagnosed with Dementia Dysphagia which impacts her ability to swallow.
"My diet has completely changed now and that can sometimes make going out to eat difficult because I can only eat certain foods. But most places are understanding and can be really good with what I need."
Nelle's ability to go shopping in a busy area has also been impacted as her dementia progresses.
"It can be a challenge because I can become quite anxious if it all becomes too much. If it's too busy and loud, it can be quite overwhelming," she said.
"My lifestyle has changed because of this."
Nelle said it's interesting to her what she can remember and what she can't.
"How I used to train disability workers or things that have an emotional connection to them are all still there and I can recall them easily, but then I can be speaking with someone and I can hear them talking but won't remember what they have said.
"People will often say they don't know how I do it. But these are the cards that I have been dealt and it's how I play them that matters."
The biggest worry for Nell, she said, is not for herself but for her family and friends.
"I worry about my family and friends and how it affects them. I know what my future looks like, but it's them that will have to manage me when I don't remember anymore," she said.
"At the moment I like to take each day as it comes and enjoy the little things in life."
Nelle has also recently been approved to receive an Alzheimer's aid dog which she will start training with once it arrives after COVID lockdown restrictions are eased and her dog can be transported from Melbourne.
"I can't wait to have a support dog. It will give me more confidence when out in public and will also be some company when I can't sleep at night," she said.
This week is Dementia Awareness Week and Nelle said it's important to continue to learn ways in which the world can be more dementia friendly.
Dementia doesn't discriminate
Over the past few years since her diagnosis, Nelle has continued to advocate for greater medical and community awareness of Younger Onset Dementia through Dementia Australia and the local Greater Port Macquarie Dementia Friendly Alliance Group.
"Dementia doesn't discriminate. It can impact people of all ages at any time. We shouldn't be pushing it under the rug," she said.
As of 2019, approximately 27,247 Australians were living with younger onset dementia across the country.
Since dementia is not as common in working-age people, it can often go unnoticed. But recognising the signs and symptoms and getting support sooner can drastically improve quality of life.
"If you do have any signs of dementia, I suggest to keep seeing your doctor like I did. It can make all the difference," Nelle said.
"I also encourage businesses and the community to reach out to the Greater Port Macquarie Dementia Friendly Alliance Group to see how they can become more dementia friendly. It would be great to see the community become more accepting of all different disabilities.
"At the end of the day it's just about being kind. And I think if everyone was kind, the world would be a much better place."