Teaching children that just because Nan or Pop might become forgetful - and even forget your name - doesn't mean your relationship should change, is high on the priority list for a new dementia group.
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Megan Harrison, a member of the Dubbo and Regional Dementia Alliance, said it was important primary and high school children understood they could still have a good relationship with their loved ones with dementia.
"We can talk about communication and the best way to engage with them ... " Ms Harrison told the Daily Liberal.
The members are on the hunt for a "key person" in each local school who could be caring for someone with dementia or have a family member or know somebody living with dementia, who can be their "way in".
"I think it's a good idea for kids to know that just because grandma's repeating herself or just because grandma forgets your name, it doesn't change the relationship," Ms Harrison said.
The alliance is in the throes of putting together its dementia action plan so it can be recognised by Australia's peak body for dementia, Dementia Australia.
They are hoping people who are living with dementia will join the group to offer their unique perspectives about what it's like to live with the disease.
"It's really important that they have a voice and we listen to them about what it's like to live with dementia and where, as an alliance, we can try and improve our community to be more dementia friendly," Ms Harrison said.
The members of the group range from those who have lived experience - including people who have cared for a person that's lived with - as well as service providers, a representative from Dubbo Regional Council and an aged care crime prevention officer from the local police.
"We want to make it an open community meeting for people that are interested in bettering the lives of those living with dementia," Ms Harrison said.
Ms Harrison cared for both her parents who lived with dementia. She hopes the alliance will educate people and in turn reduce the stigma and discrimination against people living with dementia, so they can "live their best life and have a voice".
"I still think there's not enough awareness around people living with dementia because dementia's in the brain and we can't see it," she said.
"If someone ... [is] dressed well and their social skills are still intact, people are more likely to be judgemental around, if they say something that mightn't be put in the right phrase or said at the right time.
"So just to make people aware that living with dementia, people just look like us because they do."
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The alliance plans to develop a dementia toolkit - an information sheet people can grab if they're at the local medical centre or community centre, that tells them who to call when their loved one is displaying signs of forgetfulness or is struggling with tasks.
"The aged care system is not always easy to navigate ... " Ms Harrison said.
"We're trying to simplify things for carers who are living in a situation where it's exhausting and it's tiring and they're just doing the 'do'."
To find out more about the Dubbo and Regional Dementia Alliance, call Megan Harrison on 0499 829 200.
The alliance is participating in a walk for Dementia Action Week on Tuesday, September 19, from 11am to 2pm at Victoria Park, Dubbo.
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Sarah Falson
Daily Liberal journalist. I love telling people's stories. Get in touch at sarah.falson@austcommunitymedia.com.au
Daily Liberal journalist. I love telling people's stories. Get in touch at sarah.falson@austcommunitymedia.com.au
