Lithgow has formed its very own dementia alliance with local residents coming together to support those living with dementia.
This started as part of Lithgow Council's commitment to becoming a dementia friendly place to live.
The community led group came together at Lithgow library on Thursday, November 14 for their first informal meeting to discuss how they want to be "friends of dementia".
Mayor Ray Thompson attended the meeting and said he had seen family members affected by dementia.
"I want the council to really get behind this and be a council we can be proud of, within my own family, my Aunt had early on set dementia," he said.
The group would like to start with educating local businesses, and hopefully start to see some become 'dementia friendly organisations'.
"I don't think businesses realise that dementia affects the use of motor skills, so things such as using cutlery can be difficult," dementia advocate Sebastian Caruso said.
"It's just having businesses get educated and being able to offer dementia friendly solutions."
To become a dementia friendly business require training and education.
Dementia-friendly organisations may not look physically different, but may include:
- Businesses that provide accessible services and train their employees to understand dementia.
- Employers that provide support for people living with dementia to continue with paid employment.
- Volunteering opportunities.
- Transportation options that are reliable and staffed with people who understand the cognitive deficits associated with dementia.
"Sometimes people don't know or don't want to know until it affects them, it's like a car crash, you read about it but don't care until it affects you," Cr Thompson said.
Support worker Kas Hilton said creating a group like this was about raising awareness in the town.
"It's about providing ongoing support not just to dementia patients but their carers," she said.
"I made this journey with my late mum and carers need support too and validation they are doing okay."
The space will be a safe place for people to come and share their experiences, or people are able to come and learn and educate themselves on what it is like living with dementia, Ms Hilton said.
"The journey is sad but that is an important part of the journey," she said.
"If we can advocate in the community and spread the word then it will be a real positive."
The group isn't limited to Lithgow residents, with residents from Wallerawang, Portland, Hartley and Rydal welcomed.
Mr Caruso whose partner Jeff Thurlow lives with dementia said having the group in Lithgow was a positive step in the right direction.
"It's really about being able to connect with others and educate people about how you can accommodate people living with dementia," he said.
Mr Caruso said getting the businesses involved would be crucial to the town becoming dementia friendly.
"Different diverse groups of people live in Lithgow and each have different needs that may be invisible, so it is about removing that discrimination and giving more insight," he said.
It wasn't just residents that turned out to the meeting but physio therapists from Tablelands Physio, support workers and carers from Hammond Care.
"It is instrumental for these groups in terns of support, it is like the village coming together, and demonstrates that real opportunity in helping out others with disabilities," Mr Caruso said.
Jeff Thurlow who is living with early on set dementia said that what people don't understand is that it is "business as usual" for most people living with dementia.
"People dropped out of my life because they didn't know what to say," he said.
"But just treat me like a person, it's business as usual, I've still got my sense of humour.
"It's all about sustaining what you've got now and maintaining that capability."
Mr Thurlow said Lithgow was a fabulous place to be.
"I can walk down the street and be acknowledged, so we need to take advantage of that community spirit," he said.
"I've been well supported through a counselling perspective, with counsellors having gone out of their way to educate themselves on dementia.
"It's the small steps a community and the businesses can take, it doesn't have to be confronting things just small."
Physiotherapist Sally Web from Tablelands Physio said the work they do on keeping people living with dementia active is really important.
"We don't patronise them, and the exercises are presented in a format so that it doesn't feel like exercise," she said.
Mr Thurlow said he enjoyed going to the physio because some days when you are home alone it could be lonely.
"A lot of people with dementia end up sitting at home all day, so to have a routine and keep healthy is important," he said.
"I still have my sense of humour and making sure that there is lots of laughter in my life is so important."
Cr Thompson said the first meeting of the dementia alliance proved successful.
"I believe there are lots of families affected both directly and indirectly by dementia and it would be great if we could get the Lithgow community to have a greater understanding and learn more," he said.
If your business is interested in becoming dementia friendly, you can find out more information here.
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