“What can’t we do?” was the question Lorna Nash looked to answer for people receiving a diagnosis of dementia and their families, ahead of a challenging journey ahead.
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After months of talks with other members of the Beechworth Carers Support group, the answer came back: we can’t reach people early enough.
“Then it was the article, in The Border Mail, talking about exactly what we wanted,” Mrs Nash said.
“Vicki from Alzhiemers Australia Victoria picked up on that, got in touch with me and within two days we were sitting at a table talking about it.”
Mrs Nash, in conjunction with dementia consultant Vicki Upston, has now developed a toolkit for general practitioners to hand out in the case of a dementia diagnosis.
Ms Upston said the resource pack was the first of its kind.
“There is information for the GP, quite clinical for himself or herself, but not for the patient – not from what I’m aware of,” she said.
“Clients I see are often not happy with how the doctors handled it but I think it’s improving.
“The information isn’t getting to the patients when they need it, at the very beginning of their journey.”
Beechworth Surgery practice manager John McColl said the information pack would create a “consolidated” source of advice.
“Typically what happens is somebody will have some symptoms and the next stage is, assuming it’s reasonable, the person will get some testing done,” he said.
“At that point of diagnosis, the pack would come into play.
“It brings it all together for us, whereas at the moment we’re pulling on several resources – this is a real strength to give them this.
“What it does is give every carer or person with a diagnosis some consistent information and a broad range of information about where to go and how to get support.”
Mr McColl said the pack would be trialled at the Beechworth Surgery and feedback given to Alzheimers Australia.
“I would be keen to get it in the other practices – the plan is we’ll run a bit of a pilot and see how it goes,” he said.
“There might be things that need to be improved, and once we do that, pass it forward.”
Mrs Nash hoped the toolkit would mean the support group stopped hearing of people leaving doctors’ offices feeling alone.
“When things finally break down and get out of your control, you cannot cope with that, it’s such a massive emotional trauma,” she said.
“You do need somebody around you who understands, and if you suddenly find there are other people going through the same thing, those problems you have are halved.”
Mrs Nash also celebrated another major achievement this week – along with the seven other regular members – one year on for the Beechworth carer’s support group.
For Valerie Privett, who lost her mother to dementia, the group, which has never been funded, has been a pillar of support.
“A few years ago, there wasn’t much publicity and I was floundering,” she said.
“It’s pleasing to see the group growing – we know each other’s stories and we relate to each other.
“You don’t know what it’s like until you’ve been through it … we have a bond because of the loss we experienced.”
Penny Bingham, who was a driving force behind the group, said the respite their monthly meetings provided was just as important as addressing grief.
“All of that said, it’s also quite light-hearted, there’s a lot of laughter,” she said.
“It’s an opportunity to share your Monty Python moments.”
A question mark over the future of a social program for people affected by memory loss has been lifted.
Federal funding for Cafe Connections from the Department of Health and Human Services and Gateway Health wrapped up in June.
Project officer Jenny Ryder said talks to re-boot the service had been successful.
“We want to set up Cafe Connections in Rutherglen and start another one in Beechworth,” she said.
“Beechworth Bowls Club have said they will continue to support us and Indigo North Health has offered to provide a support person from their team to assist running it in Rutherglen.
“It will be ongoing – we have secured funding and we will be looking at other locations.
“Anyone interested in being a part of a reference group should contact Bobbie Pitcher at Gateway Health on (03) 5723 2000.”
Ms Ryder said Cafe Connections, among other initiatives, showed just how important Alzheimers Australia’s pilot project for the North East had been.
“The connections coming from that central idea still live on and they’re getting stronger,” she said.
“The social contentedness of Beechworth has shone through yet again – people are getting together at the grassroots level.
“People in the town are still looking at ways to make more dementia-friendly spaces.”
Beechworth Health Service community engagement officer Anna Mackinlay said organisations who registered as supportive for people with dementia during the pilot were continuing their efforts.
“They are still supporting people in the community – the pharmacy, Indigo Council and the Beechworth Health Service,” she said.
“In September, we’re planning some events around dementia awareness month.”
Ms Mackinlay said planning, including for the carer’s group, also had to focus on the reality there might not always be funding available.
“You can’t sit around waiting for that, so that’s why we’re trying to keep things rolling,” she said.
“The other day I popped in on the carer’s meeting to say hello, and there was eight people there.
“I just thought, that’s eight people that aren’t going through this alone.”